Homecare safety and medication management with older adults: a scoping review of the quantitative and qualitative evidence

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Home Care Safety Markers: A ScopingReviewMarilyn Macdonald PhD a , Ariella Lang PhD b , Jan Storch PhD c ,Lynn Stevenson PhD d , Susan Donaldson MHSc e , Tanya Barber MA a

& Kristine Iaboni MA ba Dalhousie University , Halifax , Nova Scotia , Canadab VON Canada , Ottawa , Ontario , Canadac University of Victoria , Victoria , British Columbia , Canadad Vancouver Island Health Authority , Victoria , British Columbia ,Canadae Canadian Home Care Association , Port Perry , Ontario , CanadaAccepted author version posted online: 13 Mar 2013.Publishedonline: 16 May 2013.

To cite this article: Marilyn Macdonald PhD , Ariella Lang PhD , Jan Storch PhD , Lynn StevensonPhD , Susan Donaldson MHSc , Tanya Barber MA & Kristine Iaboni MA (2013) Home CareSafety Markers: A Scoping Review, Home Health Care Services Quarterly, 32:2, 126-148, DOI:10.1080/01621424.2013.783523

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Home Health Care Services Quarterly, 32:126–148, 2013Copyright © Taylor & Francis Group, LLCISSN: 0162-1424 print/1545-0856 onlineDOI: 10.1080/01621424.2013.783523

Home Care Safety Markers: A Scoping Review

MARILYN MACDONALD, PhDDalhousie University, Halifax, Nova Scotia, Canada

ARIELLA LANG, PhDVON Canada, Ottawa, Ontario, Canada

JAN STORCH, PhDUniversity of Victoria, Victoria, British Columbia, Canada

LYNN STEVENSON, PhDVancouver Island Health Authority, Victoria, British Columbia, Canada

SUSAN DONALDSON, MHScCanadian Home Care Association, Port Perry, Ontario, Canada

TANYA BARBER, MADalhousie University, Halifax, Nova Scotia, Canada

KRISTINE IABONI, MAVON Canada, Montreal, Quebec, Canada

Safety in home care is a new research frontier, and one in whichdemand for services continues to rise. A scoping review of thehome care literature on chronic obstructive pulmonary diseaseand congestive heart failure was thus completed to identify safety

The results of the conducted scoping review have been presented (but not published)at the following conferences: Canadian Association of Schools of Nursing, “Innovation inResearch and Knowledge Exchange,” Toronto, Ontario, May 7–10, 2012; Ontario Home CareAssociation, “Showcasing Our Best!,” Mississauga, Ontario, May 24, 2012; The CanadianAssociation for Health Services and Policy Research, “Innovations for Health SystemImprovement: Balancing Costs, Quality and Equity,” Montreal, Quebec, May 29–31, 2012;The Ontario Association of Community Care Access Centres, “Knowledge and Inspiration,”Toronto, Ontario, June 17–19, 2012; and Canadian Nurses Association, “Nurses: Movers andShapers,” Vancouver, British Columbia, June 18–20, 2012.

The authors acknowledge the Canadian Institutes for Health Research, without whomthis research would not have been possible.

Address correspondence to Marilyn Macdonald, PhD, Dalhousie University,5869 University Avenue, P.O. Box 15000, Halifax, Nova Scotia B3H 4R2, Canada. E-mail:[email protected]

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Home Care Safety Markers 127

markers that could serve to develop our understanding of safetyin this sector. Results generated seven safety markers: (a) Homealone; (b) A fixed agenda in a foreign language; (c) Strangers inthe home; (d) The butcher, the baker, the candlestick maker; (e)Medication mania; (f) Out of pocket: The cost of caring at home;and (g) My health for yours: Declining caregiver health.

KEYWORDS CHF, chronic obstructive pulmonary disease,congestive heart failure, COPD, home care, safety

INTRODUCTION

Client safety is a new frontier within the home care context. Given the dra-matic increase in the amount of care provided within the home and thecomplexity inherent in care delivery within this sector, it is essential todevelop our understanding of safety and or antecedents to safety. To this enda scoping review of the home care literature focused on chronic obstructivepulmonary disease (COPD) and congestive heart failure (CHF) was con-ducted. The review was focused on these two chronic illnesses based onthe prevalence and burden of COPD and CHF, the volume of home careliterature, and study resources.

Globally, COPD affects 64 million people. The European Unionaccounted for 13.8 million (European COPD Coalition, n.d.), the UnitedStates of America 16 million (COPD International, 2012), and Canadaapproximately 772,200 (Public Health Agency of Canada [PHAC], 2012).Canadians affected described their health as fair to poor, or steadily declining(PHAC, 2012). Worldwide, 26 million people have CHF including 5.7 mil-lion Americans (Centers for Disease Control and Prevention [CDC], 2012),6.5 million Europeans, and approximately 350,000 Canadians (CanadianHeart Failure Network, 2013; López-Sendón, 2011). Individuals living withthese chronic illnesses do so at home, and the majority of care is providedby family caregivers (Reinhard, Levine, & Samis, 2012; Canadian Home CareAssociation [CHCA], 2008).

BACKGROUND

The CHCA (2008) reported that from 1997 to 2007 home care grew by51%. The prevalence of COPD and CHF in the population means increas-ing demands on home care, and is associated with considerable client,caregiver, and societal burden. Clients have multiple health problems includ-ing dementia, experience sensory loss, and persistently use acute care

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128 M. Macdonald et al.

services (Reinhard et al., 2012; Hirdes, 2011; Mitchell, 2010). Their caregiversare usually middle aged or older, and are required to coordinate clientcare that grows exponentially with little assistance resulting in negativeexperiences and depression (Reinhard et al., 2012). The financial cost asso-ciated with CHF and COPD annually in the United States is 34 and 32 billionrespectively (CDC, 2012; COPD International, 2012).

Client safety research is an area largely neglected within the homecare context. This has resulted in a significant knowledge gap regardinghome care safety in general, and specifically in how it relates to home carerecipients and their unpaid caregivers (Lang & Edwards, 2006).

PURPOSE

The purpose of this scoping review was to identify markers that can belinked to safety in home care for clients and/or caregivers.

METHODS

Overview

The aim of a scoping review is to achieve breadth rather than depth on atopic. These reviews do not typically begin with a defined question like asystematic review, but rather remain open to what the literature may revealthroughout (Arksey & O’Malley, 2005; Weeks & Strudsholm, 2008). Teammembers worked in a collaborative manner to share information and makedecisions throughout the review process. The following section describes thesources, search terms, inclusion and exclusion criteria, synthesizing process,and analysis of the data.

Sources

The primary sources used to obtain evidence for this review included: (a)electronic bibliographic databases (12); (b) grey literature from governmentand professional association websites (5 sources); and (c) manual searchesof publications conducted on professional journals and academic periodi-cals. The full list of data sources used for this literature review is listed inTable 1.

Search Terms

The initial search strategy of including COPD and CHF in the subject, keyword, and descriptor fields yielded very few articles; therefore, the team

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TABLE 1 Data Sources for Literature Review

Electronic bibliographicdatabases searched Grey literature searched

British Nursing IndexCINAHLCochraneEMBASEMedlineOvidPsychInfoProQuest Dissertations

and Theses Full TextPubMedSociological AbstractsTheses Canada PortalWeb of Science

Canadian government websites: Canadian Agency for Drugsand Technologies in Health

(http://www.cadth.ca/en/products/health-technology-assessment)

Institute for Safe Medication Practices(http://www.ismp-canada.org/index.htm)Professional association websites: Institute of Electrical and

Electronics EngineersConference Proceedings, 1st Transdisciplinary Conference on

Distributed Diagnosis and Home Healthcare(http://ieeexplore.ieee.org/xpl/mostRecentIssue.

jsp?punumber=10817)National Institute for Health and Clinical Excellence(http://pathways.nice.org.uk/pathways/chronic-heart-

failure)(http://pathways.nice.org.uk/pathways/chronic-obstructive-

pulmonary-disease)

used the search strategy of placing COPD and CHF in the title fields with anestablished list of search terms included in the subject/keyword/descriptorfields (see Table 2), and terms to be excluded from the search process (seeTable 3). This produced 376 potential articles. Further screening resulted in180 articles included in this scoping review.

Inclusion/Exclusion

The criteria employed in identifying relevant publications included geo-graphical location of study, publication, and language. The literature deemedrelevant and used for the review was published between 2004 and 2011;though a significant portion was published between 2007 and 2009. All pub-lications are in English, except for grey literature available in French andEnglish. Table 3 lists the criteria guiding the selection of literature includedas well as excluded in the final review.

Triaging Process

This process involved three stages, with designated team members rankingthe titles, abstracts, or full-text articles as: (a) relevant, (b) potentially rele-vant, or (c) not relevant. In Stage 1, all titles retrieved were ranked by fourmembers of the research team. Those titles ranked as relevant and potentiallyrelevant were carried over to Stage 2. In Stage 2, the abstracts of all relevantand potentially relevant articles were reviewed and ranked by four teammembers. Only articles ranked as relevant from Stage 2 were carried over to

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TABLE 2 Search Terms

SettingHome care Home health aides hospital-basedHome care services Home care servicesHome nursing Private home care

Individuals in caring relationshipCare recipient Family caregiver PatientCaregiver Formal caregiver SpouseCarer Formal health care Unpaid careClient Informal caregiverFamily Paid care

Health and illness subject areasCCHFCardiac failureCongestive heart failureHeart failureCOPD

Chronic obstructive pulmonarydisease

Lung diseaseObstructive lung diseaseRespiratory tract disease

Influential factorsBenchmarking Improvement indicators Risk-mitigating factorsBest management practices Literacy SafetyBest practices Medical innovations Safety educationBiomedical technology Medical technology Safety managementBiopharmaceutics Medical therapy management Sleep deprivationClient safety Medicine Sleep disordersClinical pharmacology Mental health services Standards

assurance Patient fatigue TechnologyCaregiver burden Patient safety Total qualityCaregiver safety Patient satisfaction managementCaregiver stress Pharmaceutical preparations QualityDrug safety Pharmaceutical technology Quality controlDrug therapy Pharmacology Quality of lifeDrugs Pharmacy Quality improvementHealth care quality Risk Quality controlHealth care quality

indicatorsRisk factors

Health status indicators

Stage 3. In Stage 3, all full-text relevant articles were placed in batches andassigned to team members for review. Seven team members were involvedin the review process of Stage 3. Figure 1 summarizes the review process.

Analysis

All full-text articles and documents identified as relevant in Stage 3 werereviewed by team members and entered in an article summary table thatincluded: author, year, title, purpose, method/methodology, findings, and abrief summary. The data were then analyzed using interpretive description

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TABLE 3 Criteria Guiding the Selection of Literature

InclusionFull-text articles with abstractsLiterature published in French and English.Literature published from 2004 onward.Literature focusing on health conditions:

CCHF, COPD.Studies focusing on caregivers.

Literature published in the followingcountries: Australia, Canada, Denmark,England, Finland, Ireland, Israel,Norway, Scotland, Sweden, UnitedKingdom, United States, and Wales.

ExclusionLiterature that includes the following

keywords and terms: adolescents,Alzheimer disease, brain diseases, cardiacarrest, cerebrovascular disease, coronarydisease, coronary heart disease, children,dementia, diabetes, heart disease, infant,newborn, pediatrics, pediatry, perinatology,schizophrenia, senile dementia, stroke, andrenal failure.

Literature published prior to 2004.Literature published in countries outside of

those expressed in the inclusion.Literature published in languages other

than French and English.

Papers pulled based on Title

8 were not full articles

Elecronic Databases

Grey Literature

Manual Searches

376

Stage 3: Full-text Review:

143 R

138 PR 143 R

151 R 170 PR 55 NR

Following Title Review:

Stage 1: Title Review:

3 were not full articles & 29 did not have abstracts

Stage 2: Abstract Review: 37 R 61 PR 40 NR

180 R

These became NR

FIGURE 1 Sources and Yield From Triaging Process: R = Relevant; PR = Potentially Relevant;NR = Not Relevant (color figure available online).

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TABLE 4 Definition of Terms

Client Term used to define those individuals who are receiving health careservices within the home. Using the term “client” acknowledgesthe autonomy and choice individuals have in pursuing andobtaining health care services. It also serves to break thehierarchical patterns that often exist when individuals are seen as,or identify as, patients within the health system.

Caregiver Refers to “individuals who are in an unpaid role but are responsiblefor caring for the client. Caregivers are often family members orfriends. Family members are individuals identified by the clientand/or caregiver as being close to the client through blood, legal,or emotional ties and who may or may not reside in the samehome as the identified client” (Macdonald & Lang, 2010, p. 8).Caregivers may live with the client to whom they provide care orlive separately from the client, visiting as needed. In this review,two populations of caregivers were then identified: live-incaregivers and visiting caregivers.

Personal supportworkers

The regulated and non-regulated workers who are paid employeesof organizations providing home support services. These workersmay assist with personal care, bathing, meal preparation, andhousekeeping. They may work with, but are a separate body from,health care professionals such as nurses, therapists, case managers,pharmacists, and doctors.

Well-being The term “well-being” relates to both client and caregiver in thisscoping review and encompasses the physical, emotional, andpsychological health of these two populations.

Safety marker Refers to indicators of safety related to the client and/or caregiver.These indicators may embody conditions or situations thatcompromise the safety of home care clients and caregivers, butmay not habitually be acknowledged or identified as such(Macdonald & Lang, 2010).

methodology (Thorne, Kirkham, & O’Flynn-Magee, 2004) to identify pat-terns deemed to represent safety markers for clients and/or caregivers. Thedefinition of terms used in the manuscript is appended in Table 4.

RESULTS AND DISCUSSION

Seven markers were identified as relevant to safety in home care for clientsand/or caregivers: (a) Home alone; (b) A fixed agenda in a foreign language;(c) Strangers in the home; (d) The butcher, the baker, the candlestick maker;(e) Medication mania; (f) Out of pocket: The cost of caring at home; and (g)My health for yours: Declining caregiver health. These markers are intention-ally presented in this order to illustrate how they are linked to each otherand to client and caregiver health and safety.

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Home Alone

Individuals suffering from chronic illnesses such as COPD and CHF often facesymptoms that restrict their ability to engage in social activities, hobbies, andother interests. The marker “Home Alone” refers to home care clients’ (andoften their caregivers’) perceptions that they have been left by themselves todeal with their illness. This perception is a result of feelings of seclusion, lackof support, and decreased socialization experienced by clients with live-infamily or spousal support, as well as those who live alone.

Researchers have found that clients with COPD and CHF arefrustrated and are no longer able to participate in their social sup-port networks due to diminished physical ability to visit friends andfamily, as well as limited engagement in previously enjoyed hob-bies and activities (Aldred, Gott, & Gariballa, 2005; Cortis & Williams,2007; Elofsson & Ohlén, 2004). Specifically, it is the unpredictabilityof their illness and health status, as well as the presence of symp-toms such as breathlessness, fatigue, insomnia, headaches, falls andreduced mobility, that contribute to clients being housebound or highlydependent on others for commitments inside and outside the home(Aldred et al., 2005; Brännström, Ekman, Norberg, Boman, & Strandberg,2006).

Home care clients describe feeling abandoned or neglected by friendsand family members whose visits became less frequent as the illnessprogressed (Brännström et al., 2006; Elofsson & Ohlén, 2004). These feel-ings of abandonment extended to include health care professionals aswell. Clients with COPD and/or CHF reported feeling that they wereleft on their own to manage an illness; an illness they may not fullyunderstand due to a lack of communication, education, and informationprovided by health care professionals (Aldred et al., 2005; Brännströmet al., 2006; Hopp, Thornton, & Martin, 2010). Home care clients wholive alone were shown to experience greater loneliness than those wholived with a spouse (Brännström et al., 2006). In addition, these clientshad a higher risk for non-adherence to prescribed medication and dietaryrestrictions, both significant safety issues, thus likely requiring more fre-quent follow-up and support (Brännström et al., 2006; Davidson, Paull,Rees, Daly, & Cockburn, 2005; Sauvé, Lewis, Blankenbiller, Rickbaugh, &Pressler, 2009). Researchers also identified living alone as a predictor ofdepression and anxiety in clients with COPD and CHF (Albert & Zeller,2009; Havranek, Spertus, Masoudi, Jones, & Rumsfeld, 2004). Depressionand anxiety are important safety markers for clients as they are associatedwith higher mortality, an increased degree of health care usage, reducedquality of life, and an overall negative impact on an individual’s ability tofunction (Hasson et al., 2008; Yohannes, Willgoss, Baldwin, & Connolly,2010).

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A “Fixed” Agenda in a “Foreign” Language

A “fixed agenda” refers to the reality that the information provided toclients and their families about how to manage their chronic illness athome often follows a pre-determined script that does not recognize thespecific information needs required for each case. Often, this informationis provided using clinical terminology or medical jargon described by clientsas hearing a “foreign” language. The barriers to effective transmission ofrelevant information identified in this scoping review included: (a) lack oftime for communication from health care professionals, (b) varying difficul-ties in client or caregivers’ reception of information, and (c) problems inunderstanding the technology necessary for safe care.

LACK OF TIME FOR ADEQUATE COMMUNICATION

BY HEALTH CARE PROFESSIONALS

Despite the information needs of clients suffering from COPD and CHF athome, evidence suggests that there is a perceived lack of time and effortby health care professionals in communicating such information to clientsand answering questions based upon individual client needs (Aldred et al.,2005; Hopp et al., 2010). Lack of specific guidance or explanations about anillness or about symptoms may also lead to increased hospitalizations (Hoppet al., 2010) or create unnecessary client anxiety that may contribute to amismanagement of health symptoms (Hasson et al., 2009) and increase strainfor caregivers when making decisions about home care (Hasson et al., 2008).

CLIENT AND CAREGIVER RECEPTION OF INFORMATION

Individual client and caregiver characteristics influence effective communi-cation and capacity to receive information (Michaels & Meek, 2004; Myers,Grant, Lugn, Holbert, & Kvedar, 2006; Sauvé et al., 2009; Scherr et al., 2009).For example, several researchers have identified that cognitive impairments,such as memory loss and decreased functionality resulting from illness ormedications, may challenge a client’s ability to learn and thereby createsafety concerns because self-care decisions are based on misunderstandingthe shared information (Bartoli, Zanaboni, Masella, & Ursini, 2009; Dansky,Vasey, & Bowles, 2008; Horton, 2008; Law & Lehoux, 2004; Slater, Neander, &Carey, 2006).

Reception of information can be further confounded by cultural andlanguage barriers due to differences in the care management and infor-mation needs of clients from different cultural backgrounds (Evangelista,Ter-Galstanyan, Moughrabi, & Moser, 2009). This poses a safety risk becausethe care needs required for this group of clients may not be fully met.

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Therefore, there is a need to avoid a “fixed agenda” for providing informationto home care clients (Horton, 2008).

TECHNOLOGY CONCERNS

Technology was found to pose an additional challenge to the reception ofinformation for clients with a diagnosis of COPD and/or CHF. Technology isregarded as a positive and important tool that increases self-management andmonitoring capacity among home care clients and increases communicationbetween clients and health care professionals. However, impairments suchas diminished attention and slower motor reactions associated with CHFhave been shown to challenge a client’s ability to properly learn; utilize; andmaintain devices, equipment, or technology (Bartoli et al., 2009; Myers et al.,2006; Radai et al., 2008; Sauvé et al., 2009; Scherr et al., 2009).

Strangers in the Home

Home care is a unique environment where clients and their families haveauthority in the home, and health care professionals and personal supportworkers are guests within their clients’ homes. “Strangers in the home” refersto the number of professionals and personal support workers and staff fromvarious agencies involved in most home care settings, contributing to theclient’s home life and feelings of safety being somewhat contested whilesearching for continuity in care providers.

THE SEARCH FOR CONTINUOUS CARE

Depending on the model, the delivery of home care can alter the routineof the home setting, leaving the client and family feeling somewhat uneasywhile striving to remain in charge. Models that involve the use of severalagencies may result in numerous individuals from various agencies engagingwith a client in a manner that lacks coordination (Chattoo & Atkin, 2009).This lack of coordination leaves clients feeling overwhelmed by variouspeople coming into the home. Communication between health care pro-fessionals and personal support workers from multiple agencies can also bedifficult, which can pose safety risks associated with either the omission orduplication of specific care delivery tasks for clients (Aldred et al., 2005;Corsello & Tinkelman, 2008; Hasson et al., 2008).

Clients and their families valued continuity of care from their personalsupport workers and health care professionals with whom they can buildeffective and supportive relationships (Barnett, 2005; Boyd et al., 2009;British Thoracic Guideline Development Group, 2004; Davidson et al.,2005). Without continuity of care, it becomes extremely difficult for clientsand caregivers to develop trust for any one health care professional, thereby

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limiting their ability to communicate effectively with these individuals(Aldred et al., 2005). This limitation in trust and communication alsodecreases comfort levels in the home as clients feel like a burden to thesestrangers (Hasson et al., 2008).

The Butcher, the Baker, the Candlestick Maker

The role of the caregiver in the context of home care is multifaceted. Unlikethe team of health care professionals that are trained and prepared forvarying situations, caregivers receive no such formal education or training.The caregiver, in attempting to meet all the responsibilities and changingexpectations, becomes “the butcher, the baker, the candlestick maker” andany other role that is required in caring for a loved one. This attempt tobe everything within the caregiver role can cause strain and result in safetyrisks for both the client and caregiver. This marker encompasses two mainissues for caregivers that link to safety: (a) increasing responsibilities and (b)changes in roles.

INCREASING RESPONSIBILITIES

Caring for a client at home is complex. Most care within the home is carriedout by family members who face multiple responsibilities and expectationswith little preparation or information regarding managing an illness (Aldredet al., 2005; Clark et al., 2007; Hasson et al., 2009). Demands and respon-sibilities placed on them continue to intensify as the ill family member’scapabilities decrease. The caregiver must therefore fulfill the physical andsocial functions and needs of the client (Goodlin, 2009), particularly whenpersonal support workers or health care professionals are unavailable oroff duty. Many times, caregivers are expected to take on these responsi-bilities without hesitation, help, or support from other family members orhealth care professionals (Aldred et al., 2005) despite their already intensify-ing burden, stress, and drained levels of functioning (Ågren, Frisman, Berg,Svedjeholm, & Strömberg, 2009).

The more the client relies upon the caregiver, the greater the increase insafety risks; since there are more things to remember, do, and take care of fortheir loved one and for themselves. These responsibilities place a consider-able burden on caregivers (Abernethy, Currow, Clarke, Newton, & Davidson,2009; Goodlin, 2009; Leff et al., 2005; Narsavage & Chen, 2008; Saunders,2008), and these overwhelming tasks can create many unforeseen safetyrisks for both caregiver and client at home. For example, managing multipleand growing tasks can lead to added exhaustion and declining health for thecaregiver (Brewin, 2004; Hwang & Dracup, 2010), decreased emotional well-being within the caregiver (Bakas, Pressler, Johnson, Nauser, & Shaneyfelt,2006; Luttik, Lesman-Leegte, & Jaarsma, 2009), an inability to cope with stress

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due to their caregiver role (Bakas et al., 2006; Pressler et al., 2009), andnegative perceived caregiver outcomes such as a deteriorating future out-look and diminished financial well-being (Bakas et al., 2006; Bennett, Bakas,Johnson, & Shaneyfelt, 2004; Hasson et al., 2009).

CHANGES IN ROLES

As roles and responsibilities change, caregivers may feel they are losing theirself-sufficiency and independence (Freydberg, Strain, Tsuyuki, McAlister, &Clark, 2010). Not only do many caregivers work outside of the home, theycontinue working within the home (Saunders, 2010). These changes withinthe caregiver’s life may leave them feeling resentful and burdened on top ofthe already stressful task of taking care of their loved one (Aldred et al., 2005;Nordtug & Holen, 2011; Spence et al., 2008). Caregivers identified negativerole changes such as taking on multiple roles (e.g., wife, husband, daughter,son, sibling, nurse, doctor, etc.; Harris, 2007; Spence et al., 2008) and under-taking tasks that were previously the responsibility of the current client (e.g.,housework and cooking for many men, gardening and house maintenancefor many women, or managing all household finances; Bennett et al., 2004;Hasson et al., 2008; Hwang, Luttik, Dracup, & Jaarsma, 2010). These changesin roles frequently led caregivers to feel as though their identity was lost(Brewin, 2004; Spence et al., 2008).

On the other hand, clients reported feeling badly or frustrated watchingtheir spouses contend with what they saw as “gender-specific” work, such asmale spouses doing domestic labor and female spouses performing generalhouse maintenance activities such as mowing the lawn. This may result fromthe inability of the client to continue fulfilling the roles and responsibilitiesthey previously held themselves (Aldred et al., 2005). Feelings of frustrationand worry that develop as a result of taking on the caregiver role may evenlead to aggravation or incidences of violence toward the client by caregivers(Brewin, 2004; Woolfe, McMillan, & Conway, 2007).

Medication Mania

Medication management is a challenge when living with chronic illness.Individuals with COPD, for instance, vary widely in relation to lung func-tion, co-morbidities, cognitive functions, hand strength, and lifestyle; all ofwhich impact on the number and types of medications and devices used,as well as the degree to which these are properly managed (Caress, Luker,Chalmers, & Salmon, 2009; Fromer, Goodwin, & Walsh, 2010). The safetymarker “Medication Mania” refers to the myriad of medications needing orga-nization and monitoring by clients, caregivers, and health care professionalswithin the home care system and is characterized by changing medicationregimes and overcoming medication-related barriers.

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MULTIPLE MEDICATION REGIMES

The management of medication poses a significant safety concern for homecare recipients and caregivers. Clients and their caregivers are commonlyresponsible for multiple medications (Caress et al., 2009; Hwang et al.,2010; Slater et al., 2006; Triller & Hamilton, 2007; Upadaya et al., 2004),with some of these medications needing specific and complex devices,techniques, or guidelines for administration (Fromer et al., 2010; Quinn,2005). Failure to execute one step or adding an additional step in a med-ication regime can considerably diminish its efficacy, as well as presentpotential safety concerns, such as worsening symptoms or increases in thefrequency of exacerbations (Fromer et al., 2010). Furthermore, if the pur-pose of the medication is not clearly explained or understood, this canimpact on how or if clients continue to take a particular medication. Forinstance, VanderSchaaf, Olson, Billups, Hartsfield, and Rice (2010) reasonedthat participants stopped using inhalers because they felt they were not effec-tive in relieving their symptoms, when the actual purpose of the inhalerwas not to relieve symptoms but to prevent exacerbations. This examplehighlights important safety implications that are intertwined with medical lit-eracy and adequate medical education to help clients and caregivers managemedications safely.

It is evident from the home care literature that without a certainlevel of medication literacy and proper medication management by clients,caregivers, and health care professionals, the health status of clients candecline (Horne & Payne, 2004; Morgan et al., 2006; Schmidt, Sheikzadeh,Beil, Pattern, & Stettin, 2008).

BARRIERS TO MEDICATION MANAGEMENT

Variations in managing medications were also caused by barriers the clientsand caregivers faced when making decisions regarding their medicationtreatments (Dickson & Riegel, 2009). Issues or areas of concern leading toresistance in medication management include:

● confusion and knowledge deficits regarding their medications and how totake them (Morgan et al., 2006; Polzien, 2007; Roberts, Leeder, & Robinson,2008; Smith, 2010; VanderSchaaf et al., 2010);

● lack of physical ability (e.g., inability to open medication bottles;Dickson & Riegel, 2009);

● unwanted or unpleasant side effects with taking the medication (e.g.,increased urination from diuretics, insomnia, fatigue, sexual dysfunction,etc.; Freydberg et al., 2010; Horne & Payne, 2004; Smith, 2010);

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● obstacles in the health care system (e.g., difficulties getting in touch withhealth care personnel, tiring travel time, long waiting time, supply short-ages, medication costs, etc.; Clark et al., 2007; Davidson et al., 2005;Lundman, Brännström, Hägglund, & Strandberg, 2009; Upadaya et al.,2004; VanderSchaaf et al., 2010).

Overall, medication management in the context of home care is empha-sized as a significant safety marker that may jeopardize the health and safetyof the client.

Out of Pocket: The Cost of Caring at Home

The economics of caring is a growing issue within the home care context.Responsibilities for patient care are increasingly being moved from publicinstitutions to client homes. This creates a personal burden—both economicand emotional—for home care clients and their caregivers, thus raising safetyconcerns regarding their physical, psychological, and economic well-being.Recipients of home care frequently find themselves “out of pocket” from thehigh expenditures, lack of funding, and other personal and financial costs ofreceiving care at home.

OUT OF POCKET FOR EQUIPMENT AND SERVICES

Many home care recipients experienced high personal expenditures forhealth care equipment and services. For example, Hasson et al. (2009)reported that many caregivers had made modifications to their homes, suchas installing modified shower facilities as caregivers and clients did not wantto face long waiting lists or shortages of available equipment through fundedprograms. Clients and caregivers vary in their personal capacity to incur addi-tional costs, and this can result in inequities in the degree of quality and safetyof home care. For those with limited funds, incurring costs may well increasestress. For example, clients with COPD often require oxygen therapy. Forthese clients, the ability to access treatments such as liquid oxygen therapyholds benefits that include the provision of a lighter, more convenient sourcefor oxygen therapy outside the home. But as Law (2005) indicates, this typeof oxygen is associated with costs four times higher than standard oxygentherapy. If the liquid oxygen therapy is not covered by public funding, thenclients and caregivers are faced with the difficult decision to go with themore cumbersome traditional forms of portable oxygen, go without, or incurhigh costs out of their own pockets for the more convenient liquid portableoxygen (Law, 2005). Safety implications are significant because when themore portable forms of oxygen are not feasible, those clients may make the

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decision to forgo using oxygen during outings completely, creating a healthsafety risk (Law, 2005).

CHALLENGES TO NAVIGATING THE SYSTEM

Home care clients have also expressed frustration in their attempts to nav-igate various systems for publically funded services and equipment. Thosewho can, incur the costs for the resources required privately, increasingfinancial stress; while those who cannot afford the private path are left feel-ing helpless and without the resources they need. Clients also expressedthat overall support and advice regarding the economic or financial side ofreceiving care at home was not readily available (Brewin, 2004; Hasson et al.,2009). For example, in Hasson et al.’s (2009) study, participants reported thatinformation on available support services was sporadic and that the onlyinformation on benefit or funding programs came from hospital and clinicpamphlets, which were very limited in detail. Similarly, Brewin’s (2004) studyexamining the quality of life of caregivers found that participants were con-fused as to what assistance programs they would qualify for. These examplesillustrate those who cannot afford to pay are at a higher risk because theyare waiting longer for needed equipment and services.

CARING, WORK, AND WAGES

The costs of caring at home include growing financial burdens, stress inoverseeing household bills and health expenditures for services and equip-ment, and changes in financial well-being or status for both the client and thecaregiver (Bennett et al., 2004; Hasson et al., 2009; Hwang & Dracup, 2010).These changes are amplified by reduced working hours for pay due to anillness or caring for those who are ill. For instance, clients with a chronicillness are often forced to stop working years earlier than expected dueto their poor health (e.g., decreased mental and physical capacity to workwithout the necessary rest; Brewin, 2004; Lundman et al., 2009). Likewise,family caregivers commonly decrease their working hours to part-time sta-tus, take pay-cuts to acquire flexible schedules, or incur travel costs in orderto provide care for their loved ones (Brewin, 2004; Mendoza et al., 2009).Caregivers then have to adjust not only to a reduced income, but also tolower status employment, sometimes going from more “professional” rolesto “menial” work (Brewin, 2004). These adjustments result in the family’sincreasing financial stress and negative outlooks regarding their present andfuture economic state, often leading to depression and poor health (Bennettet al., 2004; Brewin, 2004; Evangelista et al., 2009; Hwang & Dracup, 2010;Suwanno, Petpichetchian, Riegel & Issaramalai, 2009). Overall, the healthand well-being of home care clients and family caregivers are put at risk dueto the economic costs of managing care at home.

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My Health for Yours: Declining Caregiver Health

The health of caregivers is largely affected by their caregiving responsibilities,which are often complex, and ever-mounting. Many caregivers experiencereal and perceived expectations that compel them to be present for theirloved ones 24 hours a day, often to the detriment of their own health.Therefore, caregivers often end up sacrificing their own health for the careand health of their loved ones.

TAKING ON THE CAREGIVER ROLE

Health care responsibilities have been increasingly transferred from publicinstitutions to the family (Jónsdóttir, 2008). For instance, family caregiverstend to be the one’s providing the majority of care within the home forclients with a major chronic illness (Jansen, Wouters, Schols, & Spruit, 2008;Luttik, Jaarsma, Lesman, Sanderman, & Hagedoom, 2009; Pressler et al., 2009;Quinn, 2006). When individuals take on the caregiver role, they often feelobliged to meet all expectations of caring while balancing their usual domes-tic tasks. As a result, the caregiver role has been compared to “being on arollercoaster,” as the caregiver is trying to maintain normality in the homedespite abnormal circumstances (Brännström, Ekman, Boman, & Strandberg,2007b)—such as lack of respite care, divergent opinions between caregiver,health care professional, and client; and long, strenuous hours in the care-giving role (Boyd et al., 2009; Brännström, Ekman, Boman, & Strandberg,2007a; Hasson et al., 2009; Heart Failure Society of America, 2010; Saunders,2008; Wilson, Ross, Goodridge & Davis, 2008; Woolfe et al., 2007). Thecaregiver is “on call” 24 hours a day, trying to balance activities and relax-ation for themselves and their loved one. This has been shown to lead tocaregivers’ feelings of burden and of resentment (Brännström et al., 2007a,2007b) culminating in caregiver ill health.

CAREGIVER HEALTH DECLINE AND ITS CONSEQUENCES

Declining caregiver health is an example of a negative health issue fac-ing caregivers who manage clients at home (Hasson et al., 2008; Molloy,Johnston, & Witham, 2005). The literature has indicated the followinghealth-related issues for caregivers:

● significant stress and pressure (Hasson et al., 2008; Luttik, Blaauwbroek,Dijker, & Jaarsma, 2007; Wolfe et al., 2007);

● fatigue, loss of concentration, and lack of sleep (Hasson et al., 2008, 2009;Luttik et al., 2007; Spence et al., 2008);

● feelings of helplessness, guilt, and frustration about their situation (Ågrenet al., 2009; Brewin, 2004; Harris, 2007; Hasson et al., 2009; Spence et al.,2008);

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● confusion and tension between wanting to prolong a loved one’s life andknowing they must plan for a loved one’s death (Brännström et al., 2007a;Chattoo & Atkin, 2009);

● lower quality of life (Luttik et al., 2007);● increased depression (Harkness, 2009; Narsavage & Chen, 2008; Saunders,

2008);● feelings of social isolation (Ågren et al., 2009; Hwang et al., 2010; Molloy

et al., 2005).

These consequences have been shown to restrict caregivers in pursuingtheir own activities (Pressler et al., 2009; Saunders, 2008). In addition, poorphysical health and distress may influence the ability of caregivers to givesafe care (Ågren et al., 2009; Pressler et al., 2009; Rohrbaugh, Shoham, Cleary,Berman, & Ewy, 2009) or make appropriate decisions for their loved ones(Harkness, 2009). This, in turn, can result in increased hospital readmissionfor the client (Molloy et al., 2005; Narsavage & Chen, 2008), and increasedmorbidity (Luttik et al., 2007), and mortality in caregivers (Luttik et al., 2007;Saunders, 2008).

CONCLUSION

This scoping review confirmed significant safety-related information not pre-viously identified that is meaningful for clients and caregivers. The literaturereviewed did not unilaterally link client and caregiver safety, therefore somemarkers appear more client than caregiver focused and vice versa. Clientand caregiver health and safety are linked through the identified markers.Clients and caregivers felt left on their own to manage; that the informa-tion they were provided was not what they needed; that they did not get toknow their providers yet were expected to take on a variety of responsibili-ties including managing many medications. In order to remain at home theyincurred numerous out-of-pocket expenses. This cascade of markers culmi-nated in the caregiver experiencing health problems that limited ability tocare for the client placing the health and safety of both at risk.

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