Home palliative care works:but how? A meta-ethnographyof the experiences of patientsand family caregivers

Vera P Sarmento,1,2 Marjolein Gysels,1,3 Irene J Higginson,1

Barbara Gomes1,4

ABSTRACTObjective To understand patients and familycaregivers’ experiences with home palliative careservices, in order to identify, explore andintegrate the key components of care that shapethe experiences of service users.Methods We performed a meta-ethnography ofqualitative evidence following PRISMArecommendations for reporting systematicreviews. The studies were retrieved in 5electronic databases (MEDLINE, EMBASE,PsycInfo, BNI, CINAHL) using 3 terms and itsequivalents (‘Palliative’, ‘Home care’, ‘Qualitativeresearch’) combined with ‘AND’, complementedwith other search strategies. We included originalqualitative studies exploring experiences of adultpatients and/or their family caregivers (≥18 years)facing life-limiting diseases with palliative careneeds, being cared for at home by specialist orintermediate home palliative care services.Results 28 papers reporting 19 studies wereincluded, with 814 participants. Of these, 765were family caregivers and 90% were affectedby advanced cancer. According to participants’accounts, there are 2 overarching components ofhome palliative care: presence (24/7 availabilityand home visits) and competence (effectivesymptom control and skilful communication),contributing to meet the core need for security.Feeling secure is central to the benefitsexperienced with each component, allowingpatients and family caregivers to focus on thedual process of living life and preparing death athome.Conclusions Home palliative care teamsimprove patients and caregivers experience ofsecurity when facing life-limiting illnesses athome, by providing competent care and beingpresent. These teams should therefore be widelyavailable and empowered with the resources tobe present and provide competent care.

BACKGROUNDPalliative care provides high-quality carein any setting where patients with life-threatening illnesses are cared for, beingtherefore considered as a human right.1 2

Receiving such care at home, accordingto patients and families’ preferences,3

allows people to live in their own envir-onment, while preserving the best qualityof life possible.4 In the context of ageingpopulations with growing palliative careneeds,5 and patients spending the major-ity of time being cared for at home,6

home care has become a policy priority.7

A Cochrane review8 showed that homepalliative care services help meet prefer-ences for being cared for at home, bydoubling the odds for death at homewhile decreasing symptom burden.However, this review also found that theinterventions differed considerably in the23 studies identified. Such variability isinherent to the nature of a complex inter-vention such as home palliative care,which comprises the provision of holisticcare usually by a multidisciplinary team.4

Therefore, the more than 1900 homepalliative care teams existent in Europeancountries are expected to provide differ-ent models of care, reflecting complexityand context diversity.9

In the light of this variability, it is notwell understood how home palliative careservices benefit patients and their fam-ilies. An integrative review of 17 studiesof family caregivers’ existential concernsidentified loneliness, insecurity andresponsibility as important concerns.10 Areview of patients’ and caregivers’ satis-faction with palliative care services11

found that the perceived benefits of

390 Sarmento VP, et al. BMJ Supportive & Palliative Care 2017;7:390–403. doi:10.1136/bmjspcare-2016-001141

To cite: Sarmento VP, Gysels M, Higginson IJ, et al. BMJ Supportive & Palliative Care 2017;7:390–403.

► Additional material is published online only. To view please visit the journal online (http:// dx. doi. org/ 10. 1136/ bmjspcare- 2016- 001141).

1Department of Palliative Care, Policy and Rehabilitation, King’s College London, Cicely Saunders Institute, London, UK2Department of Medicine, Hospital do Espírito Santo de Évora, Évora, Portugal3Centre for Social Science and Global Health, University of Amsterdam, Amsterdam, The Netherlands4Faculty of Medicine, University of Coimbra, Coimbra, Portugal

Correspondence toDr Vera P Sarmento, Department of Medicine, Hospital do Espírito Santo de Évora, Serviço de Medicina 2, Lg. Do Sr. da Pobreza, s/n, Évora 7000-811, Portugal; verapsarmento@ gmail. com

Received 15 March 2016Revised 14 December 2016Accepted 30 January 2017Published Online First 23 February 2017

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home palliative care included access to 24/7 supportand symptom control. Evidence from the Cochranereview on home palliative care8 also suggests that 24/7availability might be an effective component of homepalliative care.Synthesising the qualitative evidence of the experi-

ences of patients and family caregivers with home pal-liative care services will shed light on the role of thedifferent components of the intervention.12 Albeitchallenging, the identification of these key compo-nents, together with an understanding of how theyinfluence the experiences of patients and families,could be useful to research, by informing the designof interventions to be tested in the future. It couldalso influence clinical practice and health policy, byshedding light on the minimum standards needed toprovide home palliative care.13–15

In this study, we aimed to understand patients andfamily caregivers’ experiences with home palliativecare services in order to:1. Identify the key components of home palliative care that

shape the experiences of patients and family caregivers;2. Explore the mechanisms of action of the identified key

components according to patients’ and family caregivers’experiences;

3. Integrate the findings into a model of patients’ andfamily caregivers’ experiences with home palliative careservices.

METHODSStudy designIn order to ensure transparency and identify all rele-vant studies, we systematically reviewed published andunpublished literature, following a protocol designedand piloted by the team (presented as an onlinesupplementary file) and according to PRISMArecommendations.16

To synthesise the studies, we chose an interpretativemethod of analysis in order to understand how homepalliative care services work through the lenses ofpatients and caregivers. Meta-ethnography is a system-atic method for synthesising qualitative evidence, thatwas first described by Noblit and Hare,17 in 1988.Since then, it has been successfully applied onto thehealthcare field.18–20 This method consists of identify-ing and translating key concepts between studies,taking into account the context in which these con-cepts were obtained. At the end of the process, themeta-ethnographic analysis leads to a reciprocal, refu-tational and/or lines-of-argument synthesis.17

Given that meta-ethnography is a complex under-taking, we formed a multidisciplinary team compris-ing a range of different clinical and researchexperiences, including: a medical doctor with experi-ence in palliative care research and clinical end-of-lifecare (VPS, first reviewer); a senior anthropologist andpalliative care researcher with a background of linguis-tics and extensive experience in qualitative research

and meta-ethnography (MG, second reviewer); asenior palliative care researcher with a psychologybackground and expertise in home palliative careresearch (BG, third reviewer). IJH was involved in theprotocol development and overview of the study.

Identification of studiesBetween September and November 2013, we searchedthe five major healthcare bibliographic databases(MEDLINE, EMBASE, CINAHL, PsycInfo, BNI)using text words and MeSH headings to capture threeterm groups (‘Palliative’, ‘Home care’, ‘Qualitativeresearch’) combined with the operator ‘AND’ (elec-tronic search strategies are presented in an onlinesupplementary file). We have recorded the searchresults in an EndNote file and removed the duplicates.The identification of qualitative studies through

electronic search is traditionally challenging.21

Therefore, we complemented our search with othermethods such as: hand-search of relevant publications,screening of references and citation search of relevantreviews and included studies, experts consultation andscreening of conference proceedings and abstracts(non-electronic search strategies are presented in anonline supplementary file).

Selection of studiesWe considered the studies for inclusion through titlesand abstracts screening, followed by full-text screen-ing, according to the inclusion and exclusion criteriadetailed in table 1. We defined family caregivers asnon-paid lay caregivers related by blood or friendship.Components of care were defined as the elements thatbuild up a complex intervention, including beha-viours, parameters of behaviours and methods oforganising and delivering those behaviours.22

Mechanisms of action refer to how the componentsof care relate to each other in order to produce theoutcome (ie, change in status of health and welfare ofindividuals or populations confidently attributable tothe antecedent care).22 23 To define home palliativecare and distinguish generalist from intermediate orspecialist services, we applied the criteria used byGomes et al8 in the Cochrane review (presented in anonline supplementary file).When needed, we contacted the authors of poten-

tially relevant studies to ask for missing information.Finally, we discussed the inclusion of more than 10%of all full-text screened references within the team.

Quality assessmentTo assess the quality of each study, we used a modifiedversion of the CASP (Critical Appraisal SkillsProgramme) criteria, based on the work developed byCampbell et al19 24 (detailed in the Protocol presentedas online supplementary file). We answered the mainCASP questions as yes/partially/no, covering issuesrelated to methodological clarity, data collection,

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analysis and reporting of results. The first reviewerperformed the quality assessment, reported the resultsin a table and discussed these with the otherreviewers. We did not exclude studies based on theirquality assessment, as there is no evidence that thisimproves the quality of the review25 while it mayexclude studies with low reporting quality but relevantresults.19 The results of this appraisal were used tomake sense of the general quality of the studiesincluded and to identify potential pitfalls in thereporting that could influence the results of thereview.

AnalysisWe followed the steps of meta-ethnography describedby Noblit and Hare,17 which involve five interactivestages:1. Reading and re-reading the studies, and recording the

following information in a predesigned extraction form,in a Microsoft Office Excel file: general characteristics,methods, participants, home palliative care services,results (themes, quotes and explanatory theories). At thisstage, we concluded that the results of the studiesseemed to agree in the overall understanding of theexperiences of patients and caregivers with home pallia-tive care services.

2. Through the process described above, we separatelyidentified key components and experiences, followed bya discussion among the team. For this step, we used dif-ferent methods in an interactive way, in order to takeinto account the whole of the findings. Hence, we sum-marised the table developed in the first stage andmapped the emerging experiences, components of careand their relationships, aiming to understand how theresults of the studies related to each other.

3. We were then able to determine that the studies hadreciprocal (similar) results (in contrast with refutationalfindings). At this point, we compared the concepts andmaps obtained by each researcher, and agreed on theemerging experiences and key components of home pal-liative care.

4. By going back to the studies and data extraction forms,we translated the key components and experiences

between the studies, ensuring that no relevant or contra-dictory findings were being ignored. This translation wasreflected in a reciprocal translation table (presented inan online supplementary file).

5. After completing the stages above, we discussed theinterpretations entailed in the results of the review. Weidentified first, second and third-order constructs bysynthesising the reciprocal translation table in a recipro-cal translation synthesis. A new level of interpretationwas obvious at this point, with all components of carecontributing to and explaining the same experience.Therefore, we obtained a lines-of-argument synthesis,which was then represented in a simplified conceptualmodel of the experiences of patients and caregivers withhome palliative care.

RESULTSIdentification and selection of studiesWe identified 4150 papers through the electronicsearch and after removing duplicates. From these,3080 references were excluded in the screening oftitles and abstracts. We retrieved the full text of the1070 remaining references except for seven that wecould not find despite attempts to contact the authorsand the support of the library services. These are pre-sented in an online supplementary file. From theremaining 1063 references, 1032 were excluded afterfull-text screening, resulting in 40 papers reporting 30studies, from which 2 studies were identified throughother sources (citation search and reference checking).We then read and re-read all 30 studies several times.Eleven studies and one paper were excluded at thisphase because: seven studies reported experiences spe-cifically with generalist home palliative care services;four studies presented a small amount of relevantresults; one paper was about bereavement supportonly. Finally, 28 papers reporting 19 studies wereincluded (list in an online supplementary file). Allsteps of the identification and selection of studies withreasons for exclusion are presented in a PRISMA flowchart (see online supplementary file). There was nospecific order to read the studies. Initially, all studieswere analysed to the same extent, and given the same

Table 1 Inclusion and exclusion criteria

Inclusion criteria Exclusion criteria

Original research using and reporting qualitative methodologies Study does not report qualitative methods for data collection and analysis

English, Portuguese, Spanish, French and Italian Any other language

Adult patients (aged 18+) with a life-limiting diagnosis and palliative careneeds and/or their family caregivers being cared for at home

Participants other than adult patients and/or their family caregivers (eg,voluntary caregivers)

Specialist or intermediate palliative care provided at home* Generalist home care (including end-of-life home care), intervention notsufficiently described, or experiences with specific components of care

Relevant findings for the identification of key components shaping theexperiences of participants, the experiences shaped by these key componentsand mechanisms of action explaining these relationships

Findings not related to the objectives of the review, or insufficientlyinformative results

*According to the criteria used by Gomes et al8 to define home palliative care and distinguish between specialist and intermediate services (presented inan online supplementary file).

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importance. In order to ensure trustworthiness, all thefindings reported by the studies were included in thefirst stage. Nonetheless, as the review process devel-oped, some studies were found to present more com-prehensive results that were cornerstone to theunderstanding of the experiences with home palliativecare.

Characteristics of included studiesTable 2 presents the main characteristics of the 19included studies. Eleven studies were undertaken inSweden, four in the UK and one in Denmark. Threestudies were from non-European countries (two fromthe USA and one from Australia). The 19 studiesincluded data collected in semistructured or unstruc-tured interviews in 14 cases (face-to-face or by tele-phone) and in 5 cases through other methods(structured questionnaires with open-ended questionsin 4 studies and analysis of a written diary in 1 study).One of the Swedish studies was a secondary analysisof data collected in three of the included studies.Only one study was published before the year 2000and four were published from 2011 onwards.The 19 studies included 814 participants from

which the majority were family caregivers (n=765,94%), whom participated in 17 of the 19 studies.Three studies alone included more than two-thirds ofall caregivers (n=522, 68%). There was gender infor-mation for 680 caregivers, from whom 416 werewomen (61%). About one-third of participant care-givers (237) were active carers at the time of thestudy, while 528 were bereaved caregivers. From allpatients under home palliative care services (n=801),724 (90%) suffered from advanced cancer, while 77(10%) were diagnosed with advanced non-malignantdiseases.Nine studies sampled participants from specialist

services, two from intermediate services and eightstudies did not provide enough information to makethe distinction between intermediate and specialistcare. All services provided home visits, 16 includedhands-on practical care, from which 4 providedadvanced technological support (ie, interventions thatare usually seen as institution-delivered, eg, bloodtransfusions, syringe drivers). Fifteen studies wereconducted in services with 24 hours a day, 7 days aweek (24/7) availability to be contacted, and sevenvisited patients at home out-of-hours (OOH).Overall, the studies had an acceptable methodo-

logical quality (see table 3), with only one studymeeting less than half of the criteria (study 18—journal letter) and 12 studies meeting 10 or morecriteria. Less than half of the studies (n=7) had anidentified theoretical framework.Interestingly, a relationship between the quality of

the studies and the usefulness of their findings to thereview was found. By reporting methods and findingsthoroughly, and describing comprehensively the

analyses and interpretations, higher quality studiesbetter enlightened the understanding of experienceswith home palliative care.

Reciprocal comparative synthesis: key componentsof home palliative careWe found that the results of the studies were recipro-cally translatable. Although the experiences of patientsand caregivers differed, the same care componentsseemed to meet their different needs. Patients andcaregivers worked as dyads, with the suffering of oneincreasing the distress of the other.Four components of the home palliative care teams

contribute decisively to people’s experiences of care:availability, home visits, effective symptom controland effective communication skills (second-order con-structs, table 4), as illustrated by the quote below.

[What were the best aspects of hospital-based [home]palliative care?] ‘The professionalism including experi-ence and accessibility 24 hours a day. These twoaspects have equal importance and cannot be ranked’.(caregiver, study 17)

These components can be grouped according to themeaning that patients and caregivers assign to them. Ateam that was available around the clock to be con-tacted, and that visited at home, was seen as beingpresent for support. If the team effectively managedsymptoms and communicated skilfully, it was under-stood by participants as being competent. Presenceand competence were therefore identified as thethird-order constructs (table 4). This reciprocal trans-lational synthesis is presented in table 4 with illustrat-ing quotes.

PresenceThe home palliative care teams had a crucial role inproviding a sense of being accompanied instead ofbeing left alone in the difficult situation of dealingwith an advanced life-limiting disease at home. Toservice users, this meant that professional help waseasily accessed and that they were visited at home.Broadly, a team that was present yielded a sense ofsecurity and facilitated management of care athome.When being able to get support by the team 24/7,

patients and caregivers’ experience of security athome was enabled, as this meant that there was alwayssomeone knowledgeable available to give advice, whorepresented a better alternative than other immediatesupport (eg, calling an ambulance).This availability decreased the uncertainty of the

situation and facilitated trust in the team’s competenceand resources to meet their needs (table 4, Q1–Q4).OOH support could be exclusively telephonic orinclude availability for home visits if needed, thoughit was unclear if the experience of security was anydifferent with these two models.

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Table2

Characteristicsof

theinclu

dedstudies

Metho

dology

Participan

tsServicecharacteristic

s

Stud

yreference

Aim

Datacollection

Sampling

Ana

lysis

Num

ber

andtype

Clinical

characteristic

sSo

ciod

emog

raph

ics

24/7

Specialist

level

Han

ds-on

1.Brannstrom

2007(a),2006

Sweden

Exploremeaningsof

livingwith

severe

chronicheartfailure

(CHF)

Face-to

-face

interviewswith

open-ended

questions

Convenience

Phenom

eno-logical-

hermeneutic

4patients

and3

current

caregivers

SevereCH

F(NYH

AIII/IV).Experiencewith

team

:3months–2years

Patients:72–81

yearsold,

3men,2

livingwith

wife,

2alone

Carers:5

0–75

yearsold

Yes,

home

visit

Unknow

nYes

2.Brannstrom

2007

(b)Sweden

Illum

inatemeanings

ofbeingcaredfora

palliative

advanced

homecareteam

26interviewswith

open-ended

questions,3

–

5monthsintervals,

over4.5years

Convenience

Phenom

enological-

hermeneutic

1patient

andhis

caregiver

SevereCH

F(NYH

AIV).

Homepalliative

carefor

2years

Patient

andwife

about7

0yearsold,with

children

andgrandchildren

Yes,

home

visit

Unknow

nYes

3.Ew

ing2013

UKExploreperspectives

ofcarerson

support

needed

duringthe

lastmonths

9focusgroups

with

1.5–2hours

duration,

22individual

telephone

interviews

Convenience

Them

aticanalysis

75bereaved

caregivers

(6–

9months)

70patientswith

cancer,

other:MND,

Parkinson,

COPD

Carers:3

5–82

yearsold,

45wom

en,5

9spouses,13

sons

PoD:

51home,17

hospice

Yes

Unknow

nYes

4.Exley2005

UKExploreview

sand

experiences

ofa

Hospice

atHo

me

service.

Semistructured

interviews

Convenience

Fram

ework

approach

12bereaved

carers(3–

6months)

Allcancer

Carers:3

husbands,6

wives,2daughters,1

daughter-in-law.PoD

:all

home

No

Unkno w

nYes,

advanced

support

5.Goldschmid

2006

Denm

ark

Investigate

expectations

and

evaluations

ofa

palliative

home-care

team

Semistructured

interviews,patients

andtheir

caregivers,2

–

4weeks

after

referral

Convenience

Templateanalysis

6patients

and5

current

caregivers

Allcancer,diagnosed

for1

–79

months,PoD:

5home,1hospital

Patients:55–88

yearsold4

men,5

wom

en,3

lived

alone

Carers:3

wives,1

husband,

2daughters;all

>30

yearsold

Yes

Specialist

Yesby

District

Nurse

6.Harding2001

UKExploredevelopm

ent

ofappropriateand

acceptableservices

forcaregivers

Face-to

-face

semistructured

interviews,usinga

topicguide

Purposive

Groundedtheory

14current

caregivers,4

bereaved

caregivers

16patientswith

cancer,

2with

non-malignant

diseases

Carers:2

3–72

yearsold,

12wom

en,1

3FT

caregivers,5

working,

caringfor2

h–24

hoursa

dayfor2

–7months

Yes

Unknow

n(team

not

described)

Yes

7.Harding2012,

Epiphaniou

2012,

UK

Understand

caregiverssupport

needsto

provide

informalhome

palliative

care

Face-to

-face

open-ended

semistructured

interviews,30–

90minof

duration

Purposive

sampling

Them

aticanalysis

20current

caregivers

Allpatientswith

cancer

diagnosis

Patients:27–79

yearsold

Carers:2

5–79

yearsold,

11wom

en,1

3spouses,10

retired,4

FTworkers,

caringfor2

–24

hours/day

Unknow

nSpecialist

Unknow

nvisiting

team

8.Ho

lley2009

USA

Understand

definition

ofasuccessfulhome

palliative

care

experience

Indepth

face-to

-face

guided

interviewsfor2

5–60

min

Convenience

Them

aticanalysis

13bereaved

caregivers

Diagnosis:d

ementia,

cancer,failureto

thrive

Allpatients>65

yearsold

Allcarers>18

yearsold

Yes

Intermediate

Yes Continued

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Table2

Continued Metho

dology

Participan

tsServicecharacteristic

s

Stud

yreference

Aim

Datacollection

Sampling

Ana

lysis

Num

ber

andtype

Clinical

characteristic

sSo

ciod

emog

raph

ics

24/7

Specialist

level

Han

ds-on

9.Ho

lmberg

2006

Sweden

Describeandanalyse

communication

betweenadyingson

andhismother

Case

study,analysis

ofamothers’diary

Nosampling

Contenta

nalysis

1caregiver

Cancer

Patient:a

man

aged

36years,married,

1child;

Caregiver:mother

Unknow

nUn

know

n(team

not

described)

Yes,

advanced

support

10.H

udson2004

Australia

Exploreexperiences

ofsupportinga

patient

dyingof

cancerathome.

Face-to

-face

semistructured

interviews,as

part

ofan

RCT

intervention

Random

isation

Contenta

ndthem

aticanalysis

Current

caregivers

Advanced

cancer

(prognosis<

12months),

independent

Carers:alllivingwith

patient,2

/3wom

en,2

/3spouses,42%

retired

Yes

Unknow

nUn

know

n

11.H

ull1989–

1993

Ohio,USA

Understand

family

experiences

caring

forrelative

under

hospice

supported

homecare

Semistructured

interviewsand

particip

ant

observationevery

3–4weeks

(55

visitsin16

months)

Theoretical

sampling

Contenta

nalysis

14current

caregiversof

10different

families

Allpatientswith

cancer.

Totaltimeenrolledin

hospice

2.5–31

months

(priorstudy

1–26

months)

Patients:41–90

yearsold

Family

mem

bers:2

6–78

yearsold,5spouses,4

daughters,4sons,1

niece

Yes,

home

visit

Unknow

nYes

12.

Melin-Johansson

2008,Sweden

Elucidatemeaning

ofquality-of-life

asnarratedby

patients

with

cancer

Narrativeinterviews

Convenience

sampling

Contenta

nalysis,

hermeneutic

8patients

Allm

etastatic,m

ean

survivaltim

eafter

interview3months

Patients:35–83

yearsold,

6men,7

married,

2lived

with

children,1single

No

Specialist

Yes,

advanced

support

13.M

ilberg2012

Sweden

Explorepatientsand

families’experiences

ofpalliative

home

careas

a‘secure

base’

Guidedinterviews

with

open-ended

questions

(30–

90min)

Maximum

variation

sample

Deductive

content

analysis

12patients

14 caregivers

Patients:9cancer

Caregivers:1

2caring

forcancerp

atient

Patients:35–79

yearsold,

4wom

en,1

0married(2

livingalone)Caregivers:

53–79

yearsold,11

wom

en,1

3spouses

Yes,

home

visit

Specialist

Yes

14.M

ilberg2011,

2004,Sweden

Illum

inateexperience

ofpowerlessnessand

helplessnessina

palliative

homecare

context

Cross-sectional

posted

survey

with

pilotedopen-ended

questions

Conventional

sample.(RR

72%)

Qualitative

+quantitative

contenta

nalysis

233NoK,

99current

carers134

bereaved

Patients:allcancer

Patients:23–94

yearsold,

108wom

enNoK:3

1–91

yearsold,148

wom

en157spouse,5

1child

Yes,

home

visit

Specialist

Yes

15Milberg2004,

2003

Sweden

Describeconstructof

meaningfulness,

comprehensibilityand

manageabilityof

carers

30interviews

(saturation)

during

hospital-based

homepalliative

care

Maximum

variation

sampling

Hermeneutic

meaning

interpretation

19current

caregivers

Allpatientswith

cancer

Patients:57–86

yearsold,

8men

Caregivers:4

5–78

years

old,9men,7

employed,

15spouses,16

livingwith

patient

Yes

Specialist

Yes

16.M

ilberg2003

Sweden

InvestigateNoK

lastingimpressionof

homepalliative

care.

Posted

orpersonallydelivered

questionnaires.

Representative

sampling(RR

86%)

Qualitativecontent

analysis

217

bereaved

caregivers

(3–7months

after)

189(87%

)cared

for

patientswith

cancer

Carers:1

21wom

enYes,

home

visit

Specialist

Yes,

advanced

support

Continued

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ebruary 2017. Dow

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When visiting at home, palliative care professionalsrelieved caregivers from responsibility, by providingan assessment of the patient’s situation and helpingwith decision-making, but also by helping with prac-tical hands-on care (table 4, Q5–Q9). When the teamhad the resources to provide advanced technologicalsupport at home, hospital visits were avoided and feel-ings of security were enhanced. Home visits were alsoseen as an opportunity to listen to patients and fam-ilies, to give information and to discuss advanced careplanning. An unhurried calm attitude was seen asbeneficial (table 4, Q10). Studies 3 and 9 identifiedthe importance of the team being available to visit atthe time of death (table 4, Q11–Q12).Home visits were also seen as an opportunity to

have a break from caregiving, hence relieving the care-giver by providing some form of respite. The need forformal structured respite services was not congruentamong participants (table 4, Q15–Q16).

CompetenceA team which was described by patients and caregiversas competent was able to prevent, manage and relievesuffering by providing effective physical and psycho-logical symptom control and skilful communication.When relieved from suffering, participants reportedenhanced feelings of security with opportunity topursue other goals, mainly living family life at homewith normality (ie, retaining family members’ rolesand usual family activities) and preparing for death.Having access to knowledgeable professionals, who

were able to relieve patients’ physical and psycho-logical symptoms, inspired trust in the team and hopein future symptom control (Q17–Q18, table 4).The two-way process of communication was an

essential component of home palliative care. Skilfulcommunication facilitated the provision of individua-lised care adapted to family life, therefore enablingpatients and caregivers to retain some degree of nor-mality at home. A team that was available to listen topatients’ and caregivers’ life and disease history non-judgmentally, and acknowledge their roles in thedisease process but also in the family, was seen as sup-portive of patient and caregiver (table 4, Q19–Q21).Informing and giving anticipatory guidance wasanother important aspect of this component, as itallowed for patients and caregivers to participate indecision-making, increasing the chances of receivingcare tailored to their specific needs and wishes, andadapted to family life (table 4, Q22–Q24). When care-givers were confident in their skills, care was betteradapted to family life, enhancing the sense of normal-ity and management of uncertainty (table 4, Q25).

Line-of-arguments synthesis: security as the centralconcept of home palliative careWhen mapping and reflecting on the overall findingsof the reciprocal translational synthesis (table 4), weTa

ble2

Continued Metho

dology

Participan

tsServicecharacteristic

s

Stud

yreference

Aim

Datacollection

Sampling

Ana

lysis

Num

ber

andtype

Clinical

characteristic

sSo

ciod

emog

raph

ics

24/7

Specialist

level

Han

ds-on

17.M

ilberg2007

Sweden

Developtheoryabout

family

mem

bers’

experienceof

home

palliative

care

Analyticexpansionof

studies14,1

5,16

with

statem

ent

analysisandtheorysynthesis

469family

mem

bers:

118current,

351

bereaved

Patients:441with

cancer

279wom

enYes

Specialist

Yes

18.M

ilberg2000

Sweden

ToinvestigateNoK

satisfactionwith

service

Questionnairewith

3open-ended

questions

Convenience

sample

Contenta

nalysis

72bereaved

NoK

Alladults,allcancer

Alladults

Yes,

home

visit

Specialist

Yes

19.N

asstrom

2013

Sweden

Exam

inechronic

heartfailurepatients

descriptions

ofparticip

ationincare

Face-to

-face

interviews

Quotasampling

Contenta

nalysis

19patients

Allpatientswith

chronic

heartfailureNYH

AIII/IV

(18/1)

Patients:13

men,6

3–90

yearsold,11

living

alone

Yes

Intermediate

Yes

CHF,chronicheartfailure;C

OPD

,chronicobstructive

pulmonarydisease;MND,

motoneurondisease;NoK,next-o

f-kin;PoD

,place

ofdeath;

RR,responserate.

396 Sarmento VP, et al. BMJ Supportive & Palliative Care 2017;7:390–403. doi:10.1136/bmjspcare-2016-001141

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Table3

Qualityappraisalofthe

inclu

dedstudies

Stud

yreference

1.Iden

tified

aim

2.Metho

d–aim

3.Metho

d–

questio

n4.

Theo

retic

alfram

ework

5.Sampling

–aim

6.Co

llection

-aim

7.Ana

lysis

rigou

r8.

Researchers

influ

ence

9.Explicit

finding

s10

.Allda

taaccoun

ted

11.

Tran

sferab

ility

12.

Relevance

1.Sw

eden,2

006/7

Yes

Yes

Yes

Yes

Yes

Yes

Part.

Yes

Yes

Part.

Yes

Yes

2.Sw

eden,2

007

Yes

Yes

Yes

Yes

No

Yes

Part.

No

Yes

Part.

No

Yes

3.UK

,2013

Yes

Yes

Yes

No

Yes

Yes

Yes

No

Yes

No

Yes

Yes

4.UK

,2005

No

Yes

Yes

No

No

Part.

Yes

No

Yes

Part.

Yes

Yes

5.Denm

ark,2006

Yes

Yes

Yes

No

Part.

Yes

Yes

No

Yes

Yes

Yes

Yes

6.UK

,2001

Yes

Yes

Yes

No

Part.

Part.

Yes

No

Yes

Part.

Yes

Yes

7.UK

,2012

Yes

Yes

Yes

No

Yes

Yes

Yes

No

Yes

Yes

Yes

Yes

8.US,2

009

Yes

Yes

Yes

No

Part.

Yes

Yes

No

Yes

Part.

Yes

Yes

9.Sw

eden,2

006

Yes

Yes

Yes

No

No

Yes

Part.

No

Yes

Yes

No

Yes

10.A

ustralia,2

004

Yes

Yes

Yes

No

Part.

Yes

No

No

Yes

No

No

Yes

11.U

S,1989

–1993

Yes

Yes

Yes

Yes

Yes

Yes

Yes

No

Yes

Yes

Yes

Yes

12.Sweden,2

008

Yes

Yes

Yes

No

Yes

Yes

Yes

No

Yes

Yes

Yes

Yes

13.Sweden,2

012

Yes

Yes

Yes

Yes

Yes

Yes

Yes

No

Yes

Yes

Yes

Yes

14.Sweden,2

004

Yes

Yes

Yes

Yes

No

Yes

Yes

No

Yes

Yes

Yes

Yes

15.Sweden,2

003

Yes

Yes

Yes

Yes

Yes

Yes

Yes

No

Yes

Yes

Yes

Yes

16.Sweden,2

003

Yes

Yes

Yes

No

No

Yes

Yes

No

Yes

Yes

Yes

Yes

17.Sweden,2

007

Yes

Yes

Yes

Yes

Yes

Yes

Yes

No

No

No

Yes

Yes

18.Sweden,2

000

Yes

Yes

Yes

No

No

Yes

No

No

No

No

No

Yes

19.Sweden,2

013

Yes

Yes

Yes

No

Yes

Yes

Yes

No

Yes

Yes

Yes

Yes

Footnote:‘Part.’:partially.

Details

aboutthe

CASP

toolmay

befoundintheprotocolshared

asan

onlinesupplementaryfile.

397Sarmento VP, et al. BMJ Supportive & Palliative Care 2017;7:390–403. doi:10.1136/bmjspcare-2016-001141

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Table4

Recip

rocaltranslationalsynthesis:

keycomponentsof

homepalliative

careandillustrativequotes

Third

-order

constructs

Second

-order

constructs

First-orde

rconstructs

Keycompo

nentsexpe

riences

Illustrativequ

otes

(Q)

Presence

Availability24/7

Someone

trustablealwaysavailable,leadingto

increase

senseof

securityandlessuncertainty

Q1.“WhenIjustsatandsaid‘Ido

notw

anttodie,Idonotw

anttodie’,I

gotsuchintensedeathanxiety.Thenitwas

sogood

toknow

thatIcouldphone

thepalliativehomecareteam

,theywouldcomehere…

andmyhusbandcouldrestalittle.Thatissecurity,itispeace,insideme.Thatthey

arethere,if

nothingelse

isto

befound,they

arethere”

(66-year-oldwom

anwith

advanced

cancerofunknow

norigin,study

13)

Q2.“IknowthatIcan

geth

elp.Whensomething

happens,painor

something,it’s

onlyacallandthen

they

[palliativestaff]

comeafterfifteenor

thirty

minutes

atmost.…

Itreallygivesyouafeelingofsecurity…

Icom

parethatto

theyearIhad

togo

totheem

ergencydepartm

ent…

Thisisheaven…

Itis

likebeingrich…

”(35-year-oldman

with

generalised

malignancy,stu

dy13)

Q3.“Myhusbandcouldremainathomeduringthewholediseaseprocess,sleep

inhisow

nbed,spendtim

ewith

thechildren,grandchildren,andfriends

(as

long

ashe

stillhadthestrength),knowingallthe

whilethatdoctorsandotherstaffmem

berswereaccessible24

hoursaday.Thisgave

ussecurity,andit

was

aprivilege

tohave

thisarrangem

entd

uringadifficulttim

e”(caregiver,stu

dy16)

Q4.“As

soon

asyoucall,you’ve

gotsom

ebody.Within20minwehadan

answerwhenIcalledaboutthe

painmed.I

saidthatmyaunt

was

havin

gpain,

andthePercodan

wasn’tg

ettingit.Thenursesaid,“OK.

That’sOKbecausewecando

something

aboutthat.”

Ireally

thinkit’saplus

ifthere’ssomebody

thereallthe

time,becauseeven

ifyoudon’tn

eedsomething,I

know

thatit’sthereandthatmakes

abigdifference.IfIhadn’tknowntherewas

somebody

there,Im

ight

have

panicked.Justknowingthatwas

arealbighelp.She

calledallthe

timeasking

ifweneeded

thisor

needed

that.I

definitelyneeded

that

kind

ofsupport.”

(40-year-oldniece,stu

dy11)

Homevisits

Securityandreliefthrough

sharingresponsibility

ofcaregiving

with

trustablestaff

Q5.

“Thehealthcareteam

supports,giveshimintravenous

dripandthenurses

arethereforu

s!;The

nurseaskedfora

placeinthebathroom

toputthe

equipm

entb

ox,a

bigblackcarrierthatwas

locked.Itg

otits

ownplaceinthebathroom

upstairs,besidemyson’sbedroom[…

]”(caregivero

fcancer

patient,study

9)Q6.

“Whenthey

(theteam

)arehereit’ssuch

arelief,Idon’tfeellikecryin

gallthe

time,atleastthat’s

howIfeel”(caregiver,study1)

Q7.

“When[thedoctor]cam

eouttothehouseto

seeher,Ireally

thinkthatmadeherfeelbetter,andIknowitmademefeelbetter.”

(caregiver5

,study8)

Q8.

“Iftherewas

aproblemlikepain,shortnessof

breath,orifsom

eaidwereneeded

tofacilitatethecare,the

team

arranged

things:a

morphine

pump,an

oxygen

tank,a

commode,andso

on.”

(caregiver,study16)

Q9.

“Youdon’tknowwhenit’scomingclo

se[husband’sdeath]…

Andthatgivesyouafeelingof

insecurity.An

dyouworryabit…

mostu

nsureifyou

cancope

ornot…

ifsomething

happens…

soyoulose

controlofita

ll.Butyou

know

people[staffm

embers]w

illcome.Yeslikethismorning,w

henhe

hadsuch

abadturn

[husband

hadepilepticfits].Itw

asreallyrelaxedbecausethey

[staffm

embers]w

erehere”(65-year-oldwife

ofpatient

with

brain

tumour,study13)

Q10.“

No,youcantalkwith

them

.Itiseasierthan

ifyouhave

tocallthedoctor

andtalk,thenyoualwayshave

tohurry,itisnotreally

thesame//

but

they

areneverinahurry

inthatway,theyknow

,theyareneverstressed

reallybuttheycansit

thereandhave

aminuteof

peaceandquiet.Yesifthere

issomething

else

Iwanttoaskabout”

(patient

5,study19)

Q11.“

…Ithink

theworstthingwas

ittook

awhileforthe

RedCrossto

comeandfetcheverything

back.Thatw

astheworst.I

couldn’tcomeinhere

untilthey’dbeen

becauseIcouldn’tstand

lookingatan

emptybed.Thatwas

theworstIthink”(caregiver1

0,study4)

Q12.“

Bythen

mysonwas

stillconscio

usbuth

addifficulties

speaking.O

neof

thenurses

stayed

bymyson[…

]The

presence

ofthenursewas

arelief

tome;Thenurses

madetheexam

inations

thatarelegally

requiredto

declaredeath.Then

they

andthefamily

allgatheredinthekitchen.Therewas

time

totellaboutthe

lasthours,therewereopportunitiesto

weep,to

sharehugs.[…]The

nurses

took

charge

ofthepracticalities.Theyarranged

forthe

last

transportation.

Andthey

stayed

aslong

asthefamily

mem

berswantedthem

to”(caregivero

f38-year-oldpatient

with

cancer,study

9)Q13.“

Icallthem“windowsof

time”.Y

ou’vegota

nhour

hereor

twohoursthere,so

whenoneof

mydaughtersishere,orsom

ebody’shere.I’llrun

outa

nddo

somerunningaround.I’llgrab

thattim

eto

run.Youhave

tobe

kind

offlexible.Youcan’tb

erealstrict[about

your

routine].Y

ouhave

tokind

offlowwith

thepunchesandjumpon

theopportunity.O

rsom

etimes

he’llsleep

partof

thetim

eso

youcanbreakaw

aywithoutfeelinglikeyou’re

beingneglectful.”

(49-year-oldwife,study

11)

Q14.“

Ifsomeone

cameforsom

etim

eto

look

afterthepatient

andgive

thecaregivera

rest,iftheycouldstay

therefora

dayandthecaregivercan

goout,go

shopping,justtogeto

utthen,thatcouldgive

them

arealbreak…

”;“

Isso

different,I

feelIamisolated,IfeelI

don’th

avealife.”(caregiver,

study7)

Continued

398 Sarmento VP, et al. BMJ Supportive & Palliative Care 2017;7:390–403. doi:10.1136/bmjspcare-2016-001141

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Table4

Continued

Third

-order

constructs

Second

-order

constructs

First-orde

rconstructs

Keycompo

nentsexpe

riences

Illustrativequ

otes

(Q)

Q15.“

Peoplesaygo

outtakeabreakandIsay

no,I

don’tw

anttogo

anyw

here…I’m

notinterested…

.Ifeelmydutiesarehere:m

ydutyisto

workfor

myhusband.An

dIw

anttodo

asmuchas

Ican.”

(caregiver,study6)

Q16.“

IfIhad

adayoffI

willhave

adayoffb

utIamstillworriedabouth

erandIw

anttogeth

ome.So

Ican’tgo

forlongbecauseIcan’tleaveher

toolong”(caregiver,study7)

Competence

Effective

symptom

control(physicaland

psychological)

Senseof

securityby

relieving

sufferingand

trustinginteam

—opportunityto

refocuson

living

with

normality

andpreparingdeath

Q17.“

Sixweeks

ago,whenIhad

difficulty

breathing,Ifelt…

theendisapproaching…

Ijustlay

inbedandthought‘Ihopedeathwillcomesoon’…

Ihadlotsof

thoughtslikethatoverseveraldays.…

ButthenIgot

morphine[prescribed

bythepalliative

homecaredoctor]…

Ithastakenaw

aythese

thoughts…

andnowIfeelcalmagain,inmindandbody,and

secure”(62-year-oldwom

anwith

gynaecologicalcancer,study13)

Q18.“

Know

ingthatthey

know

whatthey’redoing,Ihaveconfidence

intheway

they

handleproblems.I’m

comfortable.Youcantrustthem

with

having

themedicalparto

fitcom

petentlytoo.Ican

tellfromtheway

they

expressthem

selves,thekindsof

things

thatthey

aresayin

g.They

tellyouthepointo

fwhatthey’redoing.”(40-year-oldniece,study11)

Effective

communicationskills(listen

and

acknow

ledgeroles,inform

andteach,

give

anticipatoryguidance

andsharedecision-making).

Careathometailoredto

needsandadaptedto

family

life,facilitatingnormality

athomeand

giving

asenseof

controland

masteryof

the

situation.

Increasedsecurityby

managing

uncertaintythroughguidance

Q19.“

Ifeela

bitinsecurewhenitisnotthe

samestaffm

emberscoming…

Ihavegood

contactw

iththetwoassignednurses.Itisnotthe

samewith

theothers…

Thetwoassignednurses

sitdownandtalkto

me…

noto

nlyaboutm

ebeingsick…

buta

bout

whatI

have

done

inmylife,whatI

have

been

ableto

do…

itismorepersonal”(62-year-oldman

with

prostatecancer,study

13)

Q20.“

I’vehadthreevisitsfromthepalliative

careservice

andthreedifferent

nurses

have

come,howcanthey

know

whatI

reallyneed”(caregiv er,study

10)

Q21.“

I’dhadtotalresponsibilityform

ysickrelativeforfourm

onths,andform

e,AP

HCwas

anenormousrelief.Forthe

firsttim

einaverylong

timeI

was

incrediblyrelievedjustto

have

someone

thatIcouldtalkto

sometimes.”

(caregiver,study16)

Q22.“

Throughout

thewholeperiodof

myhusband’sillness,I

tried

tobe

with

himas

muchas

possible.I

understood

whatw

ashappeningthanks

toAP

HC.Especially

duringthelastdaysthey

wereveryskilled

inpreparingus

whatw

asgoingto

happen,stepby

step.I

reallyfeltsecureandfelttheir

deep

human

qualities!”

(49-year-oldwom

an,h

usband

with

lymphom

a,study14)

Q23.“

Itisveryclear

tomewhatisgoingon,the

deterioration.Italkveryopenlywith

doctor

Xaboutthata

ndmothertakes

partinthesediscussions

too.Wediscusstheseissuesverywell,Ithink,soitisclear

tomewhatisgoingon

andthatweareapproachingtheterminalstage,rathersoon,I

think.

Interviewer:W

hydo

youthinkso

atthispoint?

Informant:Ithink

sobecauseof

herb

lood

tests,they

have

discovered

newmets,shefeelssick,haslittle

appetiteandherconditionisdeteriorating.”(caregiver,study15)

Q24.“

[Itwas

helpfulfor

mewith

informative]Talks

with

doctorsandnurses

atAP

HCatmypace.The

staffh

adasupportiveattitudethatgave

mea

feelingof

beingoneof

theteam

,thatw

asgoingto

makelifeas

comfortableas

possibleform

yhusband.”(70-year-oldwife

ofpatient

with

brain

tumour,study14)

Q25.“

I’vegota

little

coolingbagthatIhavetheinjectionin.…

Thosearethesortof

things

youhave

toremem

bertotake

with

you;

it’seasynow—

we’ve

haditso

long,sonowyouknow

whatyou

need

totake

with

youso

thatthings

willbe

okay.”

(caregiver,study2)

399Sarmento VP, et al. BMJ Supportive & Palliative Care 2017;7:390–403. doi:10.1136/bmjspcare-2016-001141

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obtained a different level of interpretation, given thatthe four components contribute to some extent to thefeeling of security at home (Q1–Q4, Q9, Q17–Q19,Q22), as shown by the second-order constructs(table 4). Security was therefore identified as thehome palliative care core mechanism of action, enab-ling patients to stay at home, as illustrated by thefollowing quote:

Now I feel safe if something happens. I know I canturn to you. (patient with cancer, Study 5)

An appropriate level of security seemed to beachieved when patients and/or caregivers were notunder unacceptable levels of suffering, that is, whenthey felt relieved (from either burden or symptoms).Hence, when being cared for by a present team, parti-cipants felt that there was always someone availablefor support and sharing of responsibility. When theteam was seen as providing competent care, it meantthat the support available was trustworthy and effect-ive (third-order constructs in table 4).In turn, feeling secure allowed patients and care-

givers to pursue two main valuable goals: (1) livingfamily life, which was fostered by being cared for athome while preserving the most valuable experiences(sometimes akin to ‘quality of life’ or ‘well-being’); (2)preparing for death, that is, saying goodbyes, complet-ing the narrative, finding meaning. The following fourquotes illustrate how home palliative care allowed forparticipants to pursue these meaningful goals, by con-tributing to their feeling of security at home.

He gets such good care and we are really happy. I alsothink the feeling of security makes us feel more free sowe can go places we haven’t been able to visit foryears. (current caregiver of chronic heart failurepatient, Study 1)

I perceived powerlessness when my husband, duringhis illness, did not get enough attention and care fromhealthcare. Since APHC came into our lives thepowerlessness has changed to confidence and calm.There is time, both for my husband and me, to reflectand to some extent accept the difficult situation weare in. (63-year-old wife of patient with GI cancer,Study 14)

My husband could remain at home during the wholedisease process, sleep in his own bed, spend time withthe children, grandchildren, and friends (as long as hestill had the strength), knowing all the while thatdoctors and other staff members were accessible24 hours a day. This gave us security, and it was a priv-ilege to have this arrangement during a difficult time.(caregiver, Study 17)

Interviewer: “Could you describe what it is like to feelsecure?” Patient: “Life with the disease does not takeover everything.… I know that if something is notworking, I only have to make a phone call [to the pal-liative home care team] to get help. This makes youfocus on other things. When I come home I do not

think about it [the illness] at all … I do other things.… and ie, the best praise I can give … that I do notthink about it.’” (35-year-old man with generalisedmalignancy, Study 13)

These relationships between key components, secur-ity, living life and preparing for death are depicted ina simplified conceptual model of the experiences ofpatients and caregivers with home palliative care(figure 1). According to the interpretation obtained inthis review, we propose the following definition ofsecurity in this context: security means to be able totrust the home palliative care team to be there forsupport, prevention and relief of avoidable sufferingat home, as the disease progresses.

DISCUSSIONBy systematically reviewing the existing qualitativeresearch on the experiences of patients and familycaregivers with home palliative care services, thismeta-ethnography found evidence that these special-ist/intermediate teams have a major role in providingsecurity at home. This was in turn achieved by theteams when they were seen as: (1) being present, thatis, with availability to be contacted 24/7 and to visitpatients and caregivers at home, and (2) being compe-tent, that is, providing effective symptom control andcommunicating skilfully. This interpretation of thepatients and caregivers experiences implies that, bycontributing to their sense of security, the home pal-liative care teams enabled patients and caregivers tofocus on the dual process of living family life and pre-paring for death, while remaining at home.Recent research suggests that caregivers’ sense of

security was higher when there was a trustful relation-ship with the physician, and when patients wererelieved from physical distress.26 In a multivariableanalysis, Milberg et al27 found that a sense of masteryover the situation was positively related to a highersense of security.The finding that patients and caregivers’ sense of

security is a condition for them to remain at home,creating the opportunity to pursue other goals, par-tially fits with Zalenski’s model of Maslow’s Theoryof Needs (adapted to palliative care). In this model,safety is physical and emotional and refers to beingfree of fear.28 Also, these findings are aligned with theattachment theory29 30 in the sense that feeling secureenabled patients and caregivers to focus on goals withan exploratory nature, that is, living life and preparingfor death. It is possible that these two processes con-figure a dynamic model, with patients and caregiversoscillating from one aspect to the other, as in the dualmodel of confrontation and avoidance behaviourswhen coping with bereavement.31 In fact, it is reason-able to assume that patients and caregivers are goingthrough a process of anticipatory grief during the pal-liative care phase.32

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Implications for policymakers, clinicians and futureresearchHealthcare professionals taking care of these popula-tions should be aware of their fundamental role ininfluencing the experience of security at home.Through competent skilful communication, teamsprovide individualised care adapted to family life,hence enhancing feelings of normality at home.Skilful communication is a complex intervention initself, comprising: (1) listening to concerns with anopen attitude; (2) acknowledging patients and care-givers as recipients and participants in care, and alsofamily members; (3) informing, teaching, givinganticipatory guidance and facilitating shareddecision-making.This review also adds to the evidence that 24/7

availability is crucial for patients and caregivers to becared for at home in such difficult situations, support-ing the recommendation of the European Associationof Palliative Care4 for teams to be available forcontact at any time.As being relieved from symptom burden is such an

important experience in enabling security, teamsshould be able to screen and closely monitorsymptom control, using for instance, patient-reportedoutcome measures like the Palliative care OutcomeScale (POS and POS-S).33 Finally, our review showsthat caregivers experience visits by home palliativecare teams to be a source of relief from caregiving

burden. Professionals should be aware of this poten-tial when visiting at home.Despite security being central to the experiences of

patients and caregivers, the more common measuresused in the home palliative care context do notcapture this concept. We therefore recommend thatthe role of home palliative care teams in enabling theexperience of security should be better understood,and security should be considered as a potentialoutcome of these interventions. Also, integration ofour results with the quantitative findings from theCochrane review8 could further enlighten the hetero-geneity found in the quantitative review, while con-tributing to the identification of these components asthe active ingredients of home palliative care. Finally,researchers should be aware of the need to adequatelyreport the home palliative care interventions receivedby participants of qualitative and quantitative studies.

Strengths and limitations—review trustworthinessWe used a systematic methodology to screen the pub-lished and unpublished literature according to therecommendations of the PRISMA statement,16 enhan-cing its dependability and credibility.34 35 The reviewfeasibility and usefulness was tested during the pilot,and the limitations found were addressed at that stage.The review also shows transferability and confirmabil-ity, given that the 19 studies originated from 5 coun-tries in 3 continents, and reported similar experiencesof patients and caregivers with home palliative careservices.Being a structured interpretative methodology suc-

cessfully used before in healthcare research,20 themeta-ethnographic method proved to be appropriateto meet the aim, guiding and structuring the interpret-ation of the findings, and allowing for interactionbetween phases.Nonetheless, a meta-ethnography is a challenging

methodology in all its stages.19 20

Despite the invaluable support from the library ser-vices and attempts to contact the authors, we couldnot retrieve seven references. Also, some decisionsregarding inclusion criteria were made later in thereview process and involved changes to the protocol(these are presented in an online supplementary file).Owing to the study interpretative nature, the find-

ings of this review are open to criticism. Otherresearchers with different philosophical stances andprofessional experiences could have obtained a differ-ent synthesis. The major a priori assumption of thereview was that, by understanding the experiences ofpatients and caregivers with home palliative care, wewould be able to identify which components of theinterventions had a major role in shaping these experi-ences. To ensure that different perspectives wereaccounted for, and that the interpretation obtainedreflected the results of the studies more than theviews of the reviewers, this study involved: (1)

Figure 1 Lines-of-argument synthesis: simplified model of theexperiences of patients’ and caregivers’ with home palliativecare.

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establishing a review team with complementary pro-fessional experiences; (2) different reviewers develop-ing separate syntheses; (3) developing a finalconceptual model that encompassed the differentinterpretations and focused on the core findings ofeach reviewer.

CONCLUSIONThis review showed that home palliative care increasesthe sense of security of patients and caregivers facinglife-threatening diseases with palliative care needs athome. Professionals taking care of these populationsshould be aware of their security-enabling role, byproviding competent care and being present. Homepalliative care teams should be widely available andempowered with the resources to be competent (ie,providing effective symptom control and skilful com-munication) and present (offering 24/7 availabilityand home visits).

Twitter Follow Vera Sarmento @Vera P Sarmento

Acknowledgements The authors express their gratitude to theCalouste Gulbenkian Foundation for funding the DINAMOproject. The authors are most grateful to Mark Kluzek and theInterlibrary and Document Delivery team of King’s CollegeLondon for invaluable support in retrieving manuscripts forfull-text screening; authors of the included studies, whoprovided the information asked for; colleagues in the CicelySaunders Institute, mainly Bárbara Antunes and JonathanKoffman for support and internal peer-review.

Contributors VPS designed and piloted the protocol under BGand IJH supervision. VPS identified and screened the studies,recorded and analysed the data, and wrote the report. MGparticipated in the screening and analyses, was closely involvedin all steps and guided the interpretation process. IJH assessedthe feasibility and usefulness of the review, with a majorcontribution during the protocol development and report of theresults. BG directly supervised all steps of the review from itsinception, provided the classification criteria for the levels ofspecialisation of home palliative care services and was involvedin screening and analyses discussions. All authors contributed tothis manuscript and agreed on the final version.

Funding This study was funded by the Calouste GulbenkianFoundation in the context of the DINAMO Project. DINAMOaims to enhance advanced training and research to optimise homepalliative care in Portugal. Principal investigator: BG. Scientificdirector: IJH. Other members of DINAMO: Ana Lacerda,Catarina Ribeiro, Diogo Martins-Branco, Duarte Soares, HelderAguiar, Maja de Brito, Pedro L. Ferreira, Rita Canario and VPS.IJH is an NIHR Senior Investigator and Head of Department ofPalliative Care, Policy and Rehabilitation at King’s College London.

Competing interests None declared.

Provenance and peer review Not commissioned; externallypeer reviewed.

Data sharing statement A table of the full reciprocal translationwith participants’ quotes and explanations offered by theauthors to illustrate the interpretation and identification of thekey components as such is available as WDS. The Excel filewith the recording table is available on request from thecorresponding author at verapsarmento@gmail.com.

Open Access This is an Open Access article distributed inaccordance with the Creative Commons Attribution NonCommercial (CC BY-NC 4.0) license, which permits others todistribute, remix, adapt, build upon this work non-commercially,and license their derivative works on different terms, provided

the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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