a multi-centre survey among informal carers who manage medication for older care recipients:...

Health and Social Care in the Community

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(2), 138–145

138

© 2003 Blackwell Publishing Ltd

Abstract

The UK Government has highlighted the need to develop appropriate information and support services for informal carers. Previous research that has investigated informal caring has found that managing medication is one aspect of the caring role that presents its own problems; however, these have not been subject to detailed examination. The objective of the present paper was to report the number and type of problems experienced by informal carers when managing medication for older care recipients, and to relate these to measures of coping and health. This was a cross-sectional survey undertaken in one district in each of four randomly selected health authority areas in England. Structured interviews, comprising closed and open questions, with 184 informal carers and 93 associated older care recipients were conducted in participants’ own homes. Data were gathered on the number and type of medication-related problems experienced in relation to the informal caring role, and the impact of these from carers’ perspectives in terms of coping and health. Sixty-seven per cent of carers reported problems with at least one medication-related activity. Problems were associated with all types of medication-related activities, and experienced by carers providing different levels of care for older people. Four themes were identified from carers’ accounts which illustrated a diversity of practical problems and anxieties: maintaining continuous supplies of medication in the home; assisting with administration; making clinical judgements; and communicating with care recipients and health professionals. Carers reporting greater numbers of medication-related problems were more likely to experience higher levels of carer strain (

P

< 0.001) and poorer mental health status (

P

< 0.001). The findings of the present study provide insights to inform the development of primary care services to support informal carers in the management of medication for older people.

Keywords:

informal carers, medication, older care recipients, pharmacy services, primary care

Accepted for publication

2 November 2002

Blackwell Science, Ltd

A multi-centre survey among informal carers who manage medication for

older care recipients: problems experienced and development of services

Felicity Smith

PhD MRPharmS

1

, Sally-Anne Francis

PhD MRPharmS

1

, Nicola Gray

PhD MRPharmS

1

, Michael Denham

MD FRCP

2

and Jonathan Graffy

MB ChB FRCGP

3

1

Department of Practice and Policy, School of Pharmacy, University of London, London, UK,

2

Denham Unit, Harrow and

Hillingdon Healthcare Trust, Middlesex, UK and

3

Statham Grove Surgery, London, UK

Correspondence

Felicity SmithReader in Pharmacy PracticeDepartment of Practice and PolicySchool of PharmacyUniversity of LondonBrunswick SquareLondon WC1N 1AXUKE-mail: [email protected]

Introduction

In the UK, it has been estimated that there are5.7 million informal carers, with a carer living in one insix households (Office for National Statistics 1998).

Ninety per cent of informal carers look after a relative;40% care for parents or parents-in-law; and 20% lookafter a spouse. Seventy per cent of carers live in the samehousehold as their care recipient (Office for NationalStatistics 1998). In its Strategy for Carers, the British

Medication for older care recipients

© 2003 Blackwell Publishing Ltd, Health and Social Care in the Community

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Government acknowledged the contribution of, andthe need to provide appropriate support services for,informal carers (Department of Health 1999).

Previous research that has investigated informalcaring has found that managing medication is oneaspect of the caring role which presents its own prob-lems. A number of studies conducted among membersof voluntary organisations have highlighted some ofthe problems which can arise from being responsible forothers’ medication. In a survey undertaken by theCarers’ National Association (now Carers UK) among itsmembers, to which a total of 2916 questionnaires werereturned (response rate = 45%), 2275 (78%) respondentsreported that a lack of information on prescribed drugswas an important problem (Carers’ National Associa-tion 1992). Also in the UK, research commissioned bythe Princess Royal Trust for Carers among a randomsample (

n

= 7000) of their members, 1213 (61%) out ofthe 1985 respondents reported that, despite a lack oftraining, they assumed responsibility for ensuring thattheir care recipient took their medication (Warner &Wexler 1998). In the USA, in a study among 145 familycarers identified through an Aging Network in 10 coun-ties of North Carolina (Mallet & King 1993), 56 carers(39%) reported that the prescribed medication taken bythe care recipient caused problems and 47 carers (32%)reported that care recipients often refused to take theirmedication as prescribed.

Medication-related problems have also been identi-fied in a number of qualitative studies. Managing med-ication was found to contribute to the stress of caring ina study among 31 family carers in North Florida, USA(Ranelli & Aversa 1994, Ranelli & Hansen 1994). In theabove study and another among 20 informal carersin the UK (Goldstein & Rivers 1996), carers reportedexperiencing a range of medication-related problemsincluding scheduling difficulties, compliance problems,difficulties organising medication to ensure that carerecipients who were forgetful took them properly and alack of timely professional advice. A study among asample of seven carers who were caring for relativestaking antidepressant medication also highlighteddifficulties in ensuring compliance with medication(Boyle & Chambers 2000).

To date, the problems experienced by carers in themanagement of medication for older care recipientshave not been subject to detailed examination, andprevious studies have mainly focused on members ofcarers’ organisations and/or involved small samples.The aims of the present study were to describe theactivities of carers when managing medication for oldercare recipients, to document the associated medication-related problems, and to relate these to measures ofcoping and health. This study was designed to include

a sample of carers from diverse backgrounds, providingdifferent levels of care, and thus, to inform the develop-ment of primary care services to support carers in thesemedication-related activities. The objective of this paperis to report the number and type of problems experi-enced by informal carers when managing medicationfor older care recipients, and to relate these to measuresof coping and health.

Subjects and methods

Data were gathered in home-based structured inter-views (conducted by teams of local interviewers) withinformal carers who assisted older care recipients withtheir medication. Where possible, interviews werealso conducted with care recipients. The study wasconducted during 1999 and 2000 in one district in eachof four health authority areas in England. The healthauthority areas were randomly selected following strat-ification according to the proportion of the populationaged over 65 years, the proportion of the populationbelonging to ethnic minority groups and socio-economicstatus (according to the under-privileged area score;Jarman 1983). The districts within each health authorityarea were identified and characterised according tothe stratifying factors that had led to the selection ofthe health authority area; the district within each of thefour health authority areas that best reflected thesefactors being selected as the study site. Ethical approvalwas obtained in each of the four study sites prior tothe commencement of data collection. Procedures andinstruments were piloted and minor modificationsmade as necessary.

In each study site, a team of interviewers wasemployed to both recruit and interview the carer andcare-recipient samples. Interviewers were required toattend a training day which was organised locally thatincluded an introduction to the present study in termsof its background and objectives, and a detailed expla-nation and discussion of study procedures, instrumentsand administrative duties. Because the majority ofinterviewers did not have a healthcare background, thetraining day included a workshop session in whichthey could practise selecting and noting the relevantinformation from a variety of mock prescription medi-cations. There was also a role-play session which pro-vided an opportunity for interviewers to follow theprocedures for obtaining written consent, requestingpermission to audiotape interviews, and to gain famili-arity with the content of the interview schedules andstyle of questions. All interviewers were also suppliedwith an interviewer’s guide. During the first few days ofdata collection at each site, each interviewer was visitedby the project manager who remained in close contact

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for the duration of the data collection. The interviewersincluded 20 women and five men, with and withoutresearch experience, whose ages ranged from 19 to79 years. Since the interviewers were recruited fromareas in which the data were being collected, the ethnicbackgrounds and languages spoken by the interviewersreflected those of the study sites. In addition, for theSouthall study site, all information and consent formswere available in both English and Punjabi (the mostcommon languages spoken in the area).

For each study site (i.e. North Oxfordshire, Coven-try, North Sefton and Southall), 10 pharmacies (virtu-ally the sole source of prescription medicines in the UK)were randomly selected (using lists of local pharmacycontractors as sampling frames) and invited to partici-pate as places of recruitment for the carer sample.Because of the rural nature of one of the study sites, adispensing doctors’ practice provided an additionalplace for recruitment. Carers were defined as peopleaged over 18 years collecting a prescription on behalf ofsomeone else aged over 60 years (i.e. the care recipient)and unpaid in their caring role. To identify all partici-pants who met the inclusion criteria, local interviewersapplied a screening questionnaire to all people collect-ing a prescription medication. It is acknowledged thatpotential carers whose care recipients received theirmedication through a pharmacy delivery service wouldbe excluded. Carers who agreed to participate werealso given a recruitment pack for their care recipient.This included an information leaflet, reply slip and aphotograph of the local interviewer who would call toconduct the interview should they agree to participate.

Separate interviews schedules were developed forcarers and care recipients, based on the literature, pre-liminary fieldwork and discussions with, and reviewsby, the steering group. Both were structured instru-ments comprising open and closed questions. Thecarer’s interview gathered data on activities and prob-lems experienced by the carer in the management ofmedication on behalf of the care recipient and contactswith health professionals. Open questions with pro-mpts, the wording of which interviewers were requiredto adhere to, were used to obtain details on all issuesraised. Personal information was collected includingage, sex, socio-economic status (Rose & O’Reilly 1998),ethnic group (using the question from the 1991 census)and their relationship with the care recipient. Further-more, in the interviews with the carers, an establishedmeasure of carer strain, the Carer Strain Index (CSI;Robinson 1983), was included. The CSI is a descriptivemeasure comprising 13 items to assess the extent towhich caring activities affected the lives of carers. Thiswas selected since it was developed and had been valid-ated among informal carers, and was currently being

used by researchers in the UK (Gunnell

et al

. 2000). Dataregarding carers’ health status were also collected usingan established measure, the Health Status Question-naire (Radosevich & Husnik 1995), validated for useamong a British population (Bowling & Windsor 1997).In the interviews with care recipients, interviewersrequested to see all currently prescribed medication.Details were collected from both the labels and the carerecipient using a series of structured questions. Theywere also asked about the help that they received, theirhealth status and personal information, as in the inter-views with carers.

In the home, written consent was obtained and inter-views were audiotaped. At the end of each interview,information leaflets of local carers’ centres and Carers’National Association were provided for carers and localAge Concern groups for care recipients.

Audiotaped interviews were transcribed into type-written data and coded manually. The coding of eachtranscribed interview was then checked and corrected,if necessary, by a member of the research team whilstsimultaneously listening to the audiotape. Quantitativedata were analysed using the SPSS for Windows 10.0statistical computer program. Comparisons betweengroups, where data were not normally distributed,were conducted using non-parametric procedures (i.e.chi-square and Mann–Whitney

U

-tests). Spearman’srank correlation was used to investigate relationshipsbetween the non-normally distributed quantitativemeasures. The responses to the open questions wereidentified in the transcripts and collated. Issues raisedwere grouped into themes and a coding frame wasdevised by discussion between three members of theresearch team. At least two researchers independentlycoded the responses to the transcribed data. Any incon-sistencies between coders were discussed and resolvedby referring back to the original transcripts.

Results

Response rates and sample characteristics

At the recruitment sites, 684 people met the inclusioncriteria for the present study, 287 (42%) of whom agreedto participate. Home interviews were successfullycompleted with 176 (25%) carers who were identified inthe pharmacies and a further eight ‘additional’ carerswho were nominated as sharing the caring activitieswith those carers recruited in the pharmacies, resultingin a total carer sample of 184. Reasons for withdrawingfrom the study following agreement in the pharmacyincluded carers’ perceptions that their contribution tothe management of their care recipient’s medicationwas too minor to warrant involvement, another member



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of the household requesting that the carer withdrawand the deteriorating health of a care recipient. Femalecarers were less likely to withdraw after initial recruit-ment (

χ

2

= 4.47, d.f. = 1,

P

= 0.035).Female carers were significantly younger than the

male carers, having a mean age of 54.8 years comparedwith 64.6 years for male carers (Mann–Whitney

U

= 2301,

z

=

−

4.615,

P

< 0.001). Out of those respond-ing to the questions, 141 carers (77%) reported owningtheir own home, and most commonly, carers (85, 47%)were retired from paid work. One hundred and fifty-five carers (84%) described themselves as the main carerof their care recipient, 103 (56%) reporting that therewas no other informal carer who assisted, while 120(65%) lived with the care recipient. Eighty-five carers(46%) were caring for a spouse/partner, 79 (43%) werelooking after a parent/parent-in-law, and 20 (11%)were assisting a different relative, friend or neighbour.The mean total score on the CSI (Robinson 1983) was5.5 (median = 6, range = 0–13). A higher total CSI scoreindicates higher strain experienced by the carer. Out ofthose responding, 61 carers (34%) reported feelingcompletely overwhelmed in their caring role. Details ofthe use of the CSI in the present study have beenreported elsewhere (Francis

et al

. 2002).The characteristics of the carer sample were com-

pared with national data. The proportion of femalecarers (61%) and those caring for a relative (92%) inthis study were similar to national data (58% and 90%,respectively). However, the carers in the present studywere older, and less likely to be in full or part timework (Office for National Statistics 1998). This may bebecause the participants in this study were a subset ofall carers, in that they were those caring for people aged60 years and over, with 46% caring for a partner. Com-pared to the 1995 Health Survey for England data (Yee& Blunden 1995), where 38% of men and 33% of womenreported their health as ‘very good’, 27% of male carersand 40% of female carers in the present study (meanage = 59 years) reported their health as ‘very good’ or‘excellent’. These differences may reflect the age struc-tures of male and female carers in this study. Nationaldata reports that the proportion of people reportingtheir health as ‘very good’ or ‘good’ declines with age(Yee & Blunden 1995).

Interviews were conducted with 93 care recipients.The smaller number of care-recipient interviews com-pared with the carer sample reflected the poorer healthstatus of some care recipients and the recruitment pro-cedures, which required care recipients to be proactivein returning a reply slip to the research team, indicatingtheir willingness to take part. Care recipients who livedwith the carer were more likely to participate (

χ

2

=15.584, d.f. = 1,

P

< 0.001).

Fourteen care recipients (15%) lived alone, and ofthose responding to the question, 69 (75%) were retiredfrom paid work. The median number of prescribedmedications which care recipients were taking was five(range = 1–19). The classes of medication most fre-quently prescribed were for cardiovascular (

n

= 69 carerecipients, 74%), central nervous system (

n

= 48, 52%)and gastro-intestinal (38, 41%) problems. The numberof different pharmaceutical formulations (e.g. tablets,liquids, creams and inhalers) being used by the carerecipients ranged from one to seven, with 27 care recip-ients (30% of those responding) using one type offormulation, 29 (32%) using two, and 35 (38%) usingbetween three and seven different formulations.

Out of those responding to the question, 45 carerecipients (50%) were prescribed regular medicationthat required administration three or more times eachday, while 44 (48%) were prescribed at least one medi-cation for use ‘as required’. For some of these products,a recommended minimum dosing interval or a maxi-mum dose may be specified on the label. However, carerecipients and/or carers reported making decisionsaccording to perceived needs.

The characteristics of carers and care recipients arereported in Table 1.

Table 1 Characteristics of carers and care recipients (NB because of missing data, n = 170–184 for carer sample; n = 80–93 for care-recipient sample)

Characteristic Carers Care recipients

Sex:male [n (%)] 71 (39%) 35 (38%)female [n (%)] 113 (61%) 58 (62%)total number 184 93

Age (years)range 30–91 60–106mean 65 74total number 181 90

EthnicityWhite [n (%)] 151 (83%) 76 (82%)non-White [n (%)] 31 (17%) 17 (18%)total number 182 93

Socio-economic classification*managerial /professional [n (%)] 59 (35%) 15 (19%)intermediate [n (%)] 42 (25%) 16 (20%)working [n (%)] 69 (40%) 49 (61%)total number [n (%)] 170 80

Self-perceived health status†:excellent /very good [n (%)] 64 (35%) 15 (16%)good [n (%)] 66 (36%) 21 (23%)fair/poor [n (%)] 54 (29%) 57 (61%)total number 184 93

* According to the new, simplified socio-economic classification (Rose & O’Reilly 1998).† Measured using the Health Status Questionnaire (Radosevich & Husnik 1995).

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Medication-related problems experienced by informal carers

The number of medication-related activities whichcarers reported undertaking ranged from one to 10 witha mean and median of six. Details of the type of activitiesand extent of involvement have been reported elsewhere(Francis

et al

. 2002). One hundred and twenty-four carers(67%) reported problems in association with at least oneactivity; 64 carers (35%) reported problems with two ormore. Table 2 summarises the number of carers whoreported at least one problem in association with eachactivity for which they provided assistance.

Whilst a small number of problems resulted fromthe special requirements of care recipients (e.g. blindness,arthritis and Parkinson’s disease), the vast majority weregeneral to medication related needs.

The results of the qualitative analysis illustratedthe contexts in which these problems were experi-enced and the consequences from the carers’ perspect-ives. In the analysis of carers’ descriptions four themesemerged:

•

maintaining continuous supplies of medication;

•

assisting with administration;

•

making clinical judgements (e.g. in response to side-effects); and

•

communicating with the care recipient and health professionals.

Maintaining continuous supplies of medication

The problems described by carers concerned liaisingwith doctors’ surgeries, pharmacies and monitoring theneed for further supplies in the care recipient’s home.

The surgeries’ prescription ordering systems presentedmany difficulties; for example, errors in prescriptions,instances when the computer had not been updated(often following discharge from hospital) or when itemslisted on the prescription did not correspond with thoserequired, and delays in the issuing of prescriptions.Medications being prescribed in different pack sizes(e.g. 28- or 30-day calendar packs) complicated thetiming of ordering because needs for different productswould not coincide. Carers described having to takeresponsibility for ensuring that the prescription detailsand products supplied were correct, which requiredconstant vigilance and careful checking.

Transport to and from the surgery and unsuitableopening times were problematic, particularly for carerswho had other demands, such as working full time orfamily commitments. This burden was increased by theneed for return visits to the surgery to query the accu-racy of a prescription. Regarding pharmacy services,incomplete supplies of medication was the most com-monly reported problem. Generic substitution, result-ing in medications which differed in their appearance,led to concerns regarding whether the correct medica-tion had been supplied. Other problems included pos-sible errors in dispensing or labelling (again requiringreturn visits) and waiting times.

Not all carers reported problems with surgeries orpharmacies, and some described systems and practiceswhich were helpful. These included the sending orfaxing of prescriptions from the surgery to the pharmacyor to the care recipient’s home, the home delivery ofmedications by pharmacy staff and the willingnessof pharmacists to ‘lend’ small supplies of medicationsuntil repeat prescriptions were available.

Table 2 Problems experienced by carers when managing medication for their care recipient (CR)

Medication-related activity (number of people who reported helping with each activity)

Problems reported with each activity by respondents

Number Percentage

Ordering CR’s prescriptions from the surgery (n = 144) 27 19Collecting CR’s prescriptions from the surgery (n = 145) 25 17Taking CR’s prescriptions to the pharmacy (n = 159) 6 4Collecting CR’s prescriptions from the pharmacy (n = 175) 53 30Buying medicines or other remedies for CR (n = 97) 8 8Giving or lending medicines to CR (n = 16) 0 0Reminding CR when to take medicines (n = 95) 25 26Opening containers for CR (n = 90) 23 26Assisting CR with taking or using medicines (n = 55) 8 15Deciding how much CR should take or how often (n = 43) 4 9Noticing and managing CR’s side-effects to medicines (n = 71) 43 61Giving CR any other information or help with medicines (n = 62) 17 27



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Assisting with administration

The practicalities of reminding care recipients to takemedication and the difficulties of encouraging com-pliance could be stressful:

Sometimes it’s a case of fetching the medicine; constantreminders, ‘Have you taken it?’ Dopamine, of course youprobably know, it needs to be taken very regularly; we’re on a2-hour cycle at the moment. We set alarms to go off at theappropriate hour, which we don’t like very much, we’re tiredof the noise. (055)

Well, I put it out … I’ll leave him sitting in a chair … I keepgoing back and going back. He won’t want to know, and I’llscream, some days it could be as many as six times, I have tokeep on. He would not take them himself, he would neverthink of taking them. (090)

Carers themselves also experienced difficulties, such asremembering the care recipient’s medication, openingcontainers, applying particular formulations and beingavailable for frequent dosing regimens which requiredregular assistance throughout the day.

Making clinical judgements

Carers’ roles in managing medication frequentlyinvolved judgements regarding the appropriatenessof therapy. Decisions by carers regarding the timingand adjustment of doses were not confined to thosemedications prescribed for use ‘as required’, but alsothose intended for regular use. In terms of how muchmedication should be taken, carers worried aboutoverdosing, underdosing and described difficulties indetermining the correct dose. Adjustments made todoses by the carers were both to accommodate theirown commitments, as well as in relation to the per-ceived needs and activities of the care recipient. Four-teen (8%) carers reported omitting a dose at some timeand 10 (6%) carers described having made a decision tostop giving a medication altogether. The most commonreason for these decisions was side-effects:

Well, about a month ago, it was suggested that I increase thebaclofen, which has a relaxing effect, but after 2 or 3 days, I feltthat he was too withdrawn, so I went back to the dosage thathe was on prior to that. (056)

Carers reported difficulties in interpreting writteninformation and package inserts (especially in rela-tion to side-effects) and assessing its relevance orimportance:

Sometimes, when you read side-effects and things like that, alot of drugs will say, ‘If you have breathing difficulties, consultyour GP’ and so on. Well, yes, she does have breathing diffi-culties, but if the GP has prescribed them, then I have to assureher that he knows all about your breathing difficulties or hewouldn’t have given you them. (131)

Communicating with care recipients and health professionals

Carers described many of the problems in the context oftheir relationship with their care recipient; for example,poor communication compounded difficulties of main-taining continuous supplies and led to frustration forcarers who were trying to check that the right medica-tion had been taken.

Reluctance on the part of care recipients to takemedication revealed differing views of carers and carerecipients regarding the need for medication:

We do have problems, although I think I’ve got her now toagree that she needs to take them. At one time, she was mess-ing them about, she’d take them for a week and think, ‘Oh,well, I’ll have a week off.’ But I think I’ve got through to hernow that it is important with both of them that she takes themregularly. and that can be extremely irritating and long-winded at times, you feel you’ve said it over and over again.(058)

Out of those responding, 46 carers (25%) reportedhaving discussed their care recipient’s medication withboth a doctor and a pharmacist while 65 (36%) had haddiscussions with neither; 36 carers (20%) reported dis-cussion solely with a doctor and the remaining 34 (19%)with the pharmacist only. Out of the carers responding,45 (25%) wanted more information, and when com-menting on the type of information they wanted,focused on routine details such as what the medicineswere, what they were for and side-effects. Carers alsodescribed problems of not being informed regardingchanges to medication:

You take the prescription in, you get the medication, you getit home, you open it up, and then you find something is differ-ent and, OK, I can phone up, but if I wasn’t here, and she getsit home and it’s something different … Until she sees me she’sworried about it: ‘Should I take it? What if it makes me ill?’ andthe thought of that would do her far more harm than perhapsthe medication would. (119)

Awareness of possible difficulties for prescribers inproviding confidential information and loss of privacyfor the care recipient were acknowledged. Carers alsoraised concerns regarding a perceived lack of review oftheir care recipients’ medication. Carers who did notreport problems with accessing information explainedthat they were proactive in contacting health pro-fessionals (doctors and pharmacists), or they referred toleaflets or other written sources.

Carers’ characteristics and reports of medication-related problems

No significant association between the age, sex, socio-economic class of carers, and whether or not theyreported medication-related problems was found.

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However, regarding ethnic groups, carers who classi-fied themselves as ‘White’ were significantly morelikely to report at least one problem when comparedwith all others (

χ

2

= 4.905, d.f. = 1,

P

= 0.027). Possiblereasons for this could not be established from thesedata.

The total number of medication-related problemsreported by carers was positively correlated with thetotal score on the CSI (Robinson 1983) (Spearman’s rankcorrelation coefficient = 0.34,

P

< 0.001), carers experi-encing higher strain reporting more problems. The totalnumber of medication-related problems reported bycarers was negatively correlated with mental health(Radosevich & Husnik 1995) (Spearman’s rank correla-tion coefficient =

−

0.26,

P

< 0.001), carers with poorermental health experiencing more problems.

Discussion

The carers of older people involved in the present studywere selected from four study sites within four ran-domly selected health authority areas in Englandfollowing stratification. Although the recruitment rateof 25% is low, and therefore, caution must be exercisedin generalising the findings to a wider population ofcarers of older people in a primary care setting, thesampling procedures were designed to reflect diversityin patterns of medication-related problems experiencedby this group.

It is apparent from the findings of this study thatproblems were associated with all types of medication-related activities, and experienced by carers providingdifferent levels of care for older people. Medicationworried carers irrespective of the types of activityundertaken. Since older people can now expect to havetheir medication reviewed at least once a year (Depart-ment of Health 2001), this should include the rationali-sation of drug therapy in the context of the carerecipient’s clinical needs and carer’s involvement. Theresponsibilities assumed by carers should be acknowl-edged, with an awareness of possible problems whichmay arise. Carer burden and competing demands couldbe used to inform consequent changes to drug therapy;for example, timing and frequency of doses, and use ofdifferent formulations. Sensitivity to the relationshipsbetween carers and older care recipients including theirsometimes differing perspectives regarding the use ofmedication is an important consideration for healthprofessionals.

The recruitment method for the present study en-abled the inclusion of carers of older people who wereproviding assistance with a single medication-relatedactivity (e.g. collection of prescriptions), who may notidentify themselves as carers, as well as those providing

intensive assistance or assuming a wide range ofresponsibilities. The development of primary care serv-ices to support carers requires a means by which allthose who may benefit are identified, many of whommay have very limited (if any) contact with healthprofessionals.

A particular need for information and support con-cerned recognising and responding to side-effects ofmedication. This was a major source of concern forcarers who undertook clinically related activities. Inter-pretation of information (e.g. that provided in informa-tion leaflets) within the context of the care recipient’shealth needs presented problems. Health professionalsmust be aware of these difficulties so that opportunitiesmay be created to provide individualised informationto support carers in their decision-making regardingtheir care recipient’s medication.

‘System’ difficulties in the surgeries were a source ofmany problems. A number of initiatives may be helpfulto carers in their endeavours to maintain continuoussupplies; for example, prompt updating of computersystems so that medication records are accurate andrepeat prescriptions are available when needed. Anumber of local initiatives to address carers’ needs insurgeries have been reported, such as carer messages onprescriptions, carer-designated notice boards in surger-ies, telephone helplines and specific programmes toimprove communication with carers (Yee & Blunden1995, Department of Health 1999). Pharmacists alsoneed to recognise that people collecting prescriptionsfor others may have caring responsibilities relating tomedication use and have systems in place to addresstheir specific needs. These include attention to suitablepackaging, clear and informative labelling, and theprovision of advice (e.g. regarding the supply andappearance of generic products). More attention toimproving communication between surgeries andpharmacies, including prescription transfer, could alsoreduce the burden for carers. In future, pharmacists willhave additional responsibilities regarding repeat pre-scriptions, supplementary prescribing and in over-seeing the needs of people on long-term medication(Department of Health 2000, 2002). Carers’ needsshould be specifically acknowledged and addressed inthe planning and implementation of these new primarycare services.

The Government has identified the need forimprovements in information, support and carefor carers as the three aims of its recent Strategy forCarers (Department of Health 1999). The present paperhighlights very specific needs for information andsupport in relation to the problems informal carersexperience when managing medication for older carerecipients.



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Acknowledgements

We wish to thank the Wellcome Trust for funding thisproject. We would like to express our appreciation ofthe interest, time and commitment of the SteeringGroup: Jonathan Graffy, General Practitioner; MichaelDenham, Honorary Consultant Physician in Care of theElderly; Paula Jones, Age Concern London; and EmilyHolzhausen, Carers’ National Association. In each ofthe study areas, we would like to acknowledge thesupport received from interviewers, interviewees,pharmacists, dispensing doctor practices and localorganisations. We would like to thank Jennifer New-bould for her assistance in the data collection.

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