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Palliative Medicine2014, Vol. 28(5) 391 –402© The Author(s) 2013Reprints and permissions:sagepub.co.uk/journalsPermissions.navDOI: 10.1177/0269216313511141pmj.sagepub.com

Home-based palliative care: A systematicliterature review of the self-reported

unmet needs of patients and carers

Adriana D Ventura 1, Susan Burney 2,3 , Joanne Brooker 2,3 , Jane Fletcher 2,3 and Lina Ricciardelli 1

AbstractBackground: There have been many studies on the unmet needs of palliative care patients and carers from the perspective ofbereaved caregivers. However, the unmet needs of palliative care patients and carers from the perspective of current patients andtheir carers have received little research attention.

Aim: As home-based services have become one of the main delivery models of palliative care, the aim of this review was to describe,evaluate and summarise the literature on the unmet needs of palliative home care patients and carers.Design: The systematic review of qualitative and quantitative studies was conducted in accordance with the Preferred ReportingItems for Systematic Reviews and Meta-Analyses (PRISMA) guidelines.Data sources: PubMed, CINAHL, Embase, MEDLINE, PsycINFO, AMED and CareSearch were searched to find empirical studies onthe self-reported unmet needs of palliative home care patients and carers.Results: Nine qualitative studies, three quantitative studies and three mixed-design studies were identified. The most frequentlyreported unmet need was effective communication with health-care professionals, the lack of which negatively impacted on the carereceived by patients and carers. Physical care needs were met, which indicates that the examined palliative home care services weredelivering satisfactory care in this domain, but lacking in other areas.Conclusions: The focus therefore should be on improving other aspects of patient care, including communication by healthprofessionals to prevent or reduce suffering in areas such as psychosocial domains. Valid and reliable quantitative measures of unmetneeds in palliative care are needed to examine this area more rigorously.

KeywordsPalliative care, home care services, needs assessment, systematic review

1School of Psychology, Deakin University, Burwood, VIC, Australia2Cabrini Monash Psycho-oncology, Cabrini Institute, Melbourne, Australia3School of Psychology & Psychiatry, Monash University, MelbourneAustralia

Corresponding author:Lina Ricciardelli, School of Psychology, Deakin University, 221 BurwoodHighway, Burwood, VIC 3125, Australia.Email: [email protected]

PMJ28510.1177/0269216313511141PalliativeMedicineVenturaet al.2013

Review Article

What is already known about the topic?• Retrospective accounts of the unmet needs of bereaved carers in palliative care settings have been examined extensively, with

carers experiencing various unmet needs.• The unmet needs of patients receiving palliative care have also been studied, however, few studies have focused speci cally on

home based palliative care patients.• This review focused speci cally on the self-reported unmet needs of patents and carer receiving home based palliative care.

What this paper adds?• Patients and carers tend to report unmet needs in psychosocial domains, while their physical needs appear to be met.• Psychometrically sound quantitative measures of unmet needs in palliative care are needed to conduct further research to

improve our understanding of this important aspect of patients’ and carers’ experience.

Implications for practice, theory or policy?• Standards of care across palliative home based care settings may need to be considered and a more holistic focus adopted in

order to meet the various unmet psychosocial needs of patients and carers.


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392 Palliative Medicine 28(5)

Introduction

Given the dramatic improvements in life expectancy inrecent decades across many countries in the Organisationfor Economic Co-operation and Development, more peoplesurvive into old age and thus encounter significant disease

burden that requires specialised health-care services towardsthe end of life. 1 Added to this, the age of potential carers isalso increasing. Palliative care, which uses a multidiscipli-nary approach, offers support to patients and carers to live asactively as possible until death, while addressing the needsof both patients and their families. Palliative care servicesare provided in inpatient and home settings, with the latter

being a dominant model of care for those at the end of life. 2

Home-based palliative care services offer many benefits,some of which include a sense of normalcy, choice and com-fort. 3 The prospect of dying at home, although only a small

portion of patients actually do so, 4 is regarded as a morecomfortable and dignified experience than dying in a hospi-

tal. 3 In addition, home-based palliative care is more cost-effective than hospital care, thus it is often promoted byhealth-care agencies. 3 Despite being an advantageous modelof care, challenges exist in providing an optimal service. Forinstance, palliative home care services rely on the contribu-tion of family carers to make home care possible. 5 Consequently, family caregivers are often in a situation ofmanaging multiple responsibilities and often forgo their ownneeds to attend to those of the patient. 3 These responsibilitiesoften go unnoticed and unaddressed by palliative care agen-cies, resulting in unmet needs. 3,6–8 There is a lack of clarity inthe literature on the definition of unmet needs, with many

empirical articles using circular definitions, or failing todefine the term, perhaps suggesting that the researchersassume a definition consistent with lay understanding ofthese words. Therefore, according to our understanding ofthe term ‘unmet needs’, needs go unmet ‘when basic require-ments to maintain quality of life have not been met’.

For patients, unmet needs tend to exist across practical,emotional, physical and existential domains. 9 On the otherhand, carers providing support to individuals receiving pal-liative care often report unmet needs for information, com-munication, service provision, support from health andcommunity services 10 and financial assistance. 11

The existing literature is largely based on the perspec-tive of bereaved caregivers and health-care professionals.To our knowledge, no systematic reviews addressing theself-reported unmet needs of palliative home care patientsand carers have been published. It was therefore our aim todescribe, evaluate and summarise the literature on unmetneeds of palliative home care patients and carers.

Methods

This review of both qualitative and quantitative studieswas conducted in accordance with the key characteristics of a

systematic review, and the Preferred Reporting Itemsin Systematic Reviews and Meta-Analyses (PRISMA) guide-lines. 12 PRISMA is an evidence-based method of ensuring aminimum set of items are reported in such reviews.Furthermore, the key characteristics of a systematic reviewinclude establishing a clearly stated set of objectives with pre-

defined eligibility criteria for studies; developing an explicit,reproducible methodology; using a systematic search to iden-tify all studies that meet the eligibility criteria; assessing thevalidity of the findings of the included studies; and synthesis-ing the characteristics and findings of the included studies. 13

Search strategy for the identification ofstudiesRelevant bibliographic databases were searched for eligiblestudies between January and August 2012. These werePubMed, CINAHL, Embase, MEDLINE, PsycINFO andAMED. A search was established for each database sepa-rately, with no restrictions on language or study methodol-ogy. While the research team did not restrict the search foryear of publication, an automatic limiter was set at 1975 bythe Deakin University Library databases, which means arti-cles were retrieved from years 1975 to 2012. Grey literaturein palliative care was also searched through the Australiandatabase CareSearch. 14

Word groups representing the key components ‘pallia-tive care’, ‘home care’, ‘unmet needs’, ‘patient’ and ‘carer’were combined in several ways using controlled vocabu-lary (i.e. MeSH, Emtree and Thesaurus of PsychologicalIndex Terms). The MEDLINE search strategy can be found

in Supplementary Appendix 1. Further detailed search his-tories are available from the corresponding author onrequest. Reference lists of the identified articles werescreened for additional relevant studies.

Inclusion and exclusion criteriaAn article was included in the review if it reported (1)empirical data (2) on the unmet needs (3) of patients andinformal caregivers (4) currently receiving palliative homecare. The inclusion criteria were further defined as follows:

1. Empirical data . Articles reporting on original stud-ies that contained explicitly formulated researchquestions and collected either qualitative and/orquantitative data. Editorials, narrative reviews andcase reports were excluded.

2. Unmet needs . Refers to the self-perceived needs of patients and carers that require professional atten-tion in addition to what is already provided.

3. Patients and informal caregivers . Studies thatincluded adult palliative care patients and/or theirinformal caregivers. Thus, articles focusing on pae-diatric palliative care patients were excluded, as


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Ventura et al. 393

were those that focused on formal caregivers of pal-liative care patients (i.e. persons employed to carefor the patient).

4. Palliative home care . This refers to the medical carethat is provided for a patient and his or her familywhen the patient has a life-limiting disease that no

longer responds to curative treatment. Articles wereexcluded if the stage of the disease was not speci-fied and if information to enable identification of

participants with a life-limiting illness was not pro-vided. Patients and carers must also have beenreceiving the care at home.

Inclusion procedureA two-stage selection process was used to determine stud-ies for inclusion. First, the inclusion criteria were appliedto the title and abstract of each article identified. The full-text article was retrieved if the review criteria were met orif there was insufficient information in the abstract toassess eligibility. The full texts were then carefullyscreened and those that met the inclusion criteria wereincluded.

Assessment of the quality of the studiesThe Standard Quality Assessment Criteria for EvaluatingPrimary Research Papers from a Variety of Fields 12 wasused to assess the quality of studies included in this review.This tool was chosen because it includes a scoring systemto systematically assess the rigour of both qualitative andquantitative study designs, and it has been widely used. 15–17 For the quantitative studies, 14 items were scored depend-ing on the degree to which the specific criteria were met(‘yes’ = 2, ‘partial’ = 1, ‘no’ = 0). Items not applicable to a

particular study design were marked ‘N/A’ and wereexcluded from the calculation of the summary score. Asummary score was calculated for each article by summingthe total score obtained across relevant items and dividing

by the total score possible for the applicable items (i.e. 28− (number of ‘N/A’ × 2)). The quality assessment checklistand summary scores for each of the quantitative studies aredetailed in Supplementary Table 1 (online).

Scores for the qualitative studies were calculated simi-larly based on the scoring of 10 items. Assigning ‘N/A’ wasnot permitted for any of the items, and a summary score wasobtained across the 10 items and dividing by 20 (total pos-sible score). The quality assessment checklist and summaryscores for the qualitative studies are described inSupplementary Table 2 (online).

The quality of the studies was assessed independently by one reviewer (A.V.). The other members of the researchteam (S.B., J.B., J.F. and L.R.) were allocated a portion ofthe studies at random, and reviewed these independently.Differences were resolved through discussion.

Results

The searches yielded 7215 citations. After removing 2002duplicate citations, 5213 titles and abstracts were screened.A total of 209 citations initially appeared to meet the inclu-sion criteria. All 209 full-text articles were retrieved andreviewed in detail. In all, 66 articles were excluded becausethey did not involve current accounts from palliative homecare patients and carers, and 51 articles were excluded

because the focus was not on unmet needs. Other reasonsfor article exclusion are detailed in Figure 1. As can also beseen in Figure 1, the article exclusion process led to a totalof 15 articles that met the inclusion criteria and formed the

basis of the review. Each of these articles was assessed formethodological quality and included in the data-extraction

process.

Methodological quality of the identified studies

Quality assessment criteria were applied to the 15 includedstudies. 12 As there is no consensus on the cut-off point forarticle inclusion in a review, articles were not excluded onthese grounds. 12 The authors of the Standard QualityAssessment Criteria for Evaluating Primary ResearchPapers from a Variety of Fields do, however, suggest that aconservative cut-off point for article inclusion would be75%, and a relatively liberal cut-off point would be 55%.Of the 15 articles, none were categorised as below 55%,with the lowest overall quality assessment score being60%, with only two articles receiving this score. Whilethese summary scores are useful in providing an overallinterpretation of the methodological quality of includedstudies, a detailed critique of the studies is also necessary inorder to understand the specific strengths and weaknessesof and examine how the results of each study accounted forindividual differences in unmet needs. This critique is pro-vided below, starting with the quantitative studies.

The characteristics of the participants were adequatelydescribed in all quantitative studies, with all of these stud-ies gaining full scores on this criterion. Furthermore,appropriate conclusions were drawn from the results in allof the quantitative studies. In one quantitative study, 18 theauthors did not describe the method of participant group

selection, and thus received a score of 0 on this criterion.However, as the study had other methodological strengths,such as an appropriate sample size, the overall quality ofthis article was high receiving a summary score of 89%.In comparison, another study, 19 which did not receive ascore below 1 on the criteria, had the poorest overall qual-ity (67%) because it only partially satisfied many of thecriteria. Overall, the studies had more strengths thanweaknesses.

The main weakness across the qualitative studies wasthe lack of evidence of reflexivity, with the authors of onlyone study 20 partially fulfilling this criterion. Another weak-


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ness was the lack of a verification procedure to establishcredibility, and in six of the studies, 7,19,21–24 a score of 0 wasgiven for this criterion. The major strengths of the qualita-tive studies were the clearly described research questionsand/or objectives, and the clarity of the context for eachstudy. In fact, all studies received full scores for both thesecriteria.

The authors of included studies, in general, provided a breakdown of participant age and gender, with the excep-tion of two studies. 20,24 This basic demographic informationis important and needs to be provided in research articles togive the reader some indication of how individual differ-ences impact on participant appraisal. In six stud-ies, 7,19,20,23–25 individual differences in unmet needs wereaccounted for by recruiting participants with more than onelife-limiting illness, and in two of these studies, 20,25 a com-

parison of unmet needs by illness type was undertaken.In one of the studies 23 that focused on carer unmet

needs, the authors accounted for individual differences by

examining the number of carers who received assistancefrom one or more relatives and friends. This is an importantconsideration, as it is likely to have a major impact on theunmet needs of informal carers.

In only six of the included studies, individual differencesin unmet needs were accounted for, beyond describingdemographic information. Given that most of the studies

included in this review used qualitative methodology, this isnot surprising as this limits ability to account for individualdifferences and needs to be a consideration when interpret-ing these results, and in further research.

The characteristics of the 15 included articles and theirassessment scores are summarised in Tables 1–3.

All articles that addressed patient unmet needs only aresummarised in Supplementary Table 1 (online), while allarticles that addressed carer unmet needs only are summa-rised in Supplementary Table 2 (online). Finally, the studiesthat involved both patients and carers are summarised inTable 1.

Records identified through databasesearching(n =7161)

S c r e e n

i n g

I n c

l u d e

d

E l i g

i b i l i t y

I d e n

c a

o n

Additional records identifiedthrough other sources

(n = 54)

Records after duplicates removed(n = 2002)

Records screened(n =5213)

Records excluded(n =5004)

Full-text articles assessedfor eligibility

(n = 209)

Full-text articles excluded(n =194)

Reasons:

Not palliative home care (n= 70) Not current carer or patient (n = 66)Unmet needs not primary outcome(n=51)Sample with cognitive deficits(n=3)

Not empirical (n= 4)

Studies included inqualitative synthesis

(n = 15)

Figure 1. PRISMA flowchart of included and excluded studies.PRISMA: Preferred Reporting Items for Systematic Reviews and Meta-Analyses.


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A u t h o r

( p u b l i c a t i o n

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J o e t a l . ( 2 0 0 7 ) 2 7

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W h a t a r e t h e p e r s p e c t i v e s

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0

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g r o u p s . C a r e r s a l s o e x p r e s s e d

s p i r i t u a l n e e d s .

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l u n g

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d c a r e r s

w e r e c h a r a c t e r i s e d b y d e s p a i r ,

p u n c t u a t e

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i s o d e s o

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i n g t o m a i n t a

i n a p o s

i t i v e

o u t l o o k . S

p i r i t u a l c o n c e r n s o f

h e a r t f a i l u r e p a t i e n t s a n d t h e i r

c a r e r s w e r e c h a r a c t e r i s e d

b y

h o p e

l e s s n e s s ,

i s o l a t i o n a n

d a l t e r e d

s e l f - i m a g e . P

a t i e n t s m a i n t a i n e d a

‘ b r a v e f a c e

’ s o a s t o n o t u p s e t

o t h e r s , t

h e r e

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n e e d s w e n t u n r e c o g n i s e

d .

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G P : g e n e r a

l p r a c t

i t i o n e r .

T a

b l e 3

. ( C o n t i n u e d )


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Ventura et al. 399

Unmet needs

The results of the articles were combined, and the collec-tive identified unmet needs were then categorised. Where

possible, patient and carer unmet needs were distinguished.However, as there was some overlap between the catego-ries, it appears that many are interrelated. Categories weredeveloped using a systematic process, in which an unmetneed must have appeared in the results section of at leasttwo of the studies. The most frequently reported unmetneeds were discussed first, with communication with health

professionals the most commonly reported.

Communication needsOpen communication within the home care service was acommon unmet need for patients and carers and was dis-cussed in six of the articles. 19,23,24,26–28 Regular communi-cation with doctors and nurses, as well as between primary

and secondary care staff, was lacking. For both patientsand carers, this led to uncertainty as to who should be con-tacted in times of needs. 19,23,26 The problems with commu-nication within services led to poor continuity of care asdifferent health-care staff attended patients’ homes regu-larly. The result was that often health workers were notaware of the services delivered by other health profession-als. This was viewed as a major problem for patients andcarers, as it appeared that the services were poorlyco-ordinated. Patients and carers also found it very diffi-cult to form relationships with service workers. 24,27 Communication problems in consultations with doctors

were also reported as an unmet need, as patients and carers believed that they were not being listened to. They alsoreported that the doctors were not interested in them or hadenough time to listen to their concerns and that the doctorsoften were not familiar with the current concerns of the

patient. 24,27,28

Spiritual needsThe focus of two studies was specifically on spiritualneeds, 20,25 and in both studies, qualitative interviews wereused. A common issue that emerged from these, as well as

two other studies, was fear of death and fear about futureevents and problems. Both patients and carers experiencedthis, 20,25,28,29 and these fears were so debilitating that some

patients expressed a need to end their life. 25 Another unmetneed was an inability to attend religious services, and lesscommon unmet needs were to pray and be with friends andfamily. 18 In one study, 20 spiritual needs varied across differ-ent patient groups, with lung cancer patients and carersexpressing despair and episodes of hope, and heart failure

patients and carers expressing hopelessness and an alteredself-image. In this same study, patients reported that theydid not want to burden those around them, and attempted to

maintain a ‘brave face’. As a result, their spiritual needswent unmet.

Psychosocial needsThere were five studies in which patient and carer psycho-

social needs were identified.21,23,26,28,29

These were the needfor support with worries, fear of suffering and death andcoping with an unpredictable future 26,28,29 The psychosocialneeds were more prevalent than experiencing physical painas an unmet need. 28 Some carers stated that they requiredemotional support from a professional counsellor whileothers preferred peer support. 23 To talk about the patient’sillness, yet not having the opportunity to do so, was men-tioned frequently by patients and carers. 21,23,26,28 In particu-lar, some patients wanted to be able to discuss adaptation totheir new role in their intimate relationship, including sex-ual intimacy. 21,26

Practical needsPractical unmet needs were discussed by patients and car-ers in five of the studies. 7,22,23,28,29 These included the needfor assistance with transport and outdoor mobility, such asaccess to wheelchairs. 7,22 Assistance and support withequipment provision, occupational support and child mind-ing was expressed by carers. 23 Assistance with householdtasks such as housework was reported by both patients andcarers. 7,23 A major unmet need for patients and carers wasthe provision of financial assistance. 22,23,28,29

Informational needsThe need for more information was identified in five stud-ies. 22,23,26,29,30 Patients and carers wanted more informationabout the illness, often about managing their lives andmaking decisions, and how the condition would pro-gress. 22,23 Patients were particularly concerned about whatwould happen to their partner when they died 26 and pre-cisely when they would die. Carers required more infor-mation about what to do at the time of the patient’s death. 19 Carers also expressed that they would like to be giveninformation in writing 29 and a need for more information

about their caregiving role.29,30

For example, they wantedinformation about skills to manage patient symptoms sothat they would feel more competent as a care provider.They also wanted information about alternative medicinesand euthanasia. 29

Respite careThe need for respite care was mentioned in four of the stud-ies. 19,23,30,31 It was mostly mentioned by carers who wanted

palliative home care services to provide this service so thatthey could have respite from their caregiving role. 19,23,30


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Furthermore, in one study, patients indicated that this wasan unmet need for them and wished that the service wouldoffer respite for their carer. 31

Isolation

The term ‘isolation’ was used in four of the studies and wasa source of unmet need for both patients and carers. 21,24,26,31 Some patients felt isolated because their family did notwant to talk to them about their illness. Many believed thislack of communication was the result of the stigma associ-ated with their condition. 21 Patients and carers felt that theillness itself was isolating because it did not allow the

patient to leave their home. 26 In fact, some carers expresseda desire for the palliative service to offer assistance withgetting the patient out of the house and undertaking activi-ties. 31 Furthermore, patients indicated that they would feelvery isolated if their home care nurse did not visit and talkwith them regularly. 24

Loss of autonomy Loss was an issue that arose in two studies. 26,28 In a qualita-tive interview study, where patients and carers were inter-viewed together, patients reported the loss of ability to takeholidays and spend quality time with their grandchildren. 26 Loss of autonomy, which includes limitation of usual activ-ities, being dependent and losing control over life was alsoreported to be an unmet need for patients in one quantita-tive study. 28 This was an area for which patients wantedmore assistance from the home care service.

Discussion

In all, 15 empirical studies that focused on the self-reportedunmet needs of palliative home care patients and theirinformal carers were included in this review. A range ofunmet needs were identified, including communication,spiritual, psychosocial, practical, informational and respiteneeds, as well as those associated with isolation and loss ofautonomy. Open communication with health professionalswas the most frequently identified unmet need for both

patients and carers.

Strengths and limitations of the review In addition to the methodological strengths and weaknessesdetected through the quality assessment process, severalother strengths and limitations were observed. For exam-

ple, the majority of studies focused on advanced cancer patients and/or their carers. However, there are other patients in palliative care settings with medical conditionsapart from cancer. Therefore, there was a lack of diversityacross study participants. A further limitation is the lack ofdiversity across cultures. Of the 15, 7 studies included in

this systematic review were from the United Kingdom,which has a more equitable health system than many othercountries. 32 Both of these aforementioned limitationsresulted in a narrow view of the palliative care experienceand therefore have implications for generalisability of thefindings.

A further challenge was extracting patient and informalcarer specific results from studies in which both groupswere represented. In these studies, the findings for patientsand carers were integrated in the results section. By aggre-gating the carer and patient experiences, the unique needsof each group may have been neglected. In most studies, itwas not clear whether the unmet need was unique to the

patient or to the carer. Furthermore, given the use of jointinterviews in two of the studies, it was difficult to deter-mine how much patients and carers influenced each other’sresponses when discussing their experiences.

Interviews were the dominant mode of data collection inthe studies reviewed. In 11 of the studies, semi-structuredinterviews were used, with joint patient/carer interviewsemployed in two others. Reliance on qualitative data,although extremely useful in gaining a broader understand-ing of the lived experience of participants, also has the

potential to produce biased results. For instance, research-ers may extricate parts of the interview that fit theiragenda. 33 Another limitation is that generalisability of thefindings in qualitative research is limited. This is becauseinterviews are only conducted with a small sample of par-ticipants, with this number generally dependent on thenumber required to reach data saturation. 34 Despite this, theresults of the studies produced fairly consistent findings,

strengthening the evidence for the unmet needs identifiedacross multiple studies.

The inclusion of current caregivers as opposed to bereaved caregivers was another strength of the review. Inthe past, there have been many studies addressing the unmetneeds of palliative care patients and carers. However, inthese studies, participants were bereaved rather than cur-rent caregivers. 2,35–38 Although the views of bereaved carersare important, caution must be exercised as they may bemore likely to report on the positive aspects of caring 39 andto evaluate institutional services more positively than whenthey were a carer. 40 By relying on current accounts from

patients and carers, more reliable and robust results mayhave been obtained compared to past research. Furthermore,this review is unique, as to the best of our knowledge, noother systematic review addressing the unmet needs of cur-rent palliative home care patients and carers has beenundertaken to date.

Literature synthesisGiven the systematic nature of this review, it is possible todraw some overall conclusions. It is evident that home-based

palliative patients and their carers experience unmet needs


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Ventura et al. 401

across a range of domains and that communication withhealth professionals was the most frequently reported unmetneed for patients and carers. Both groups believed that com-munication in the home care service was lacking, and thisimpacted negatively on their experiences as a service recipi-ent. Other frequently reported unmet needs were associated

with spiritual, psychosocial, practical and informational con-cerns, and less commonly those associated with respite, iso-lation and loss of autonomy.

Physical needs, which have historically shown to be ahighly unmet domain in palliative care, 9 did not appear to

be a significant concern for the participants in this review.This suggests that palliative care agencies may place moreemphasis on the preservation of physical well-being thanon other domains such as the psychosocial and spiritualneeds of patients, or that agency staff do not have the skillsor resources to appropriately address psychosocial and spir-itual issues.

In contrast to past research, the results of this reviewrevealed that patients and carers appear to experience verysimilar unmet needs. Previously, patient and carer needshave typically been segregated, and their needs describedas distinct from one another. In this review, however, theresults suggest that the needs of patients and carers aremuch more aligned than previously reported. 6 For example,

both patients and carers expressed fear about death and theunpredictable future, and both patients and carers wouldhave valued the opportunity to talk to a professional aboutthe illness. Furthermore, the need for respite was character-ised as an unmet need by both carers and patients.

Implications for policy and practiceThe finding that patient and carer unmet needs are similarhas implications for interventions that could be developedto address these needs. As well as addressing patient andcarer issues separately, it appears likely that programmes orinformation sessions that can assist patients and carerstogether may be of benefit. One of the most prominentissues experienced by patients and carers was that staffwere not communicating effectively, and patients reportedthat doctors had little time for them and were therefore una-

ble to listen to their concerns. In addition, patients and car-ers expressed a need to talk about the illness with someone,

but this service was not offered to them. The need for assis-tance with household tasks, and financial support were alsocommon areas of unmet need for patients and carers.Managers and policy makers need to consider and addressthese factors if palliative care services are to provide higherlevels of care. The standards of care may also need to beconsidered. Although it seems the physical aspects of carewere rated highly by patients and carers, other aspectsshould be given consideration, and benchmarks for care inthese areas may need to be raised. 41

Future researchThe findings of this review have been derived mostly fromqualitative studies involving semi-structured interviews.This is due partly to the sensitive nature of issues experi-enced by those receiving palliative care, and also becauseof the dearth of quantitative measures that have been devel-oped to assess the unmet needs of palliative care patientsand carers. Very few unmet needs tools have been createdspecifically for the broader palliative care population, withseveral developed to measure the needs of cancer patients

but not other groups. Although a large proportion of patientsreceiving palliative care have cancer, not all patients do,and therefore, there is an urgent need for the developmentof global, reliable and valid measures of unmet needs in the

palliative setting.

Conclusion

The relief of physical, psychological and spiritual sufferingis a central concern of palliative care services. It appearsfrom the results of this review that the relief of physical suf-fering is generally managed in an appropriate manner, andtherefore, in that respect, participants in the studies consid-ered in this review received high-quality care. Other forms ofsuffering, however, are also extremely important. In thisreview, it was concluded that patients and carers frequentlyself-report spiritual and psychosocial needs with physicalneeds often less of a concern. It is anticipated that the identi-fication of these needs may contribute to the implementationof effective services and interventions that will improve the

care received by palliative home care patients and carers.

Declaration of conflicting interestsThe authors declare that there is no conflict of interest.

FundingThis research received no specific grant from any funding agencyin the public, commercial or not-for-profit sectors.

Supplementary MaterialThe online tables are available at http://pmj.sagepub.com/ supplemental-data.

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C o p y r i g h t o f P a l l i a t i v e M e d i c i n e i s t h e p r o p e r t y o f S a g e P m a y n o t b e c o p i e d o r e m a i l e d t o m u l t i p l e s i t e s o r p o s t e d t o h o l d e r ' s e x p r e s s w r i t t e n p e r m i s s i o n . H o w e v e r , u s e r s m a y i n d i v i d u a l u s e .

home-based palliative care

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