Function of Local Networks in Palliative Care: A Dutch View

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808 JOURNAL OF PALLIATIVE MEDICINE Volume 8, Number 4, 2005 © Mary Ann Liebert, Inc. Function of Local Networks in Palliative Care: A Dutch View C.V.M. VAHEDI NIKBAKHT-VAN DE SANDE, M.A., 1 C.C.D. VAN DER RIJT, M.D., Ph.D., 2 A. Ph. VISSER, Ph.D., 3 M.A. TEN VOORDE, M.A., 4 and J.F.A. PRUYN, Ph.D. 5 ABSTRACT Background: Although network formation is considered an effective method of stimulating the integrated delivery of palliative care, scientific evidence on the usefulness of network for- mation is scarce. In 1998 the Ministry of Health of The Netherlands started a 5-year stimula- tion program on palliative care by founding and funding six regional Centres for the Devel- opment of Palliative Care. These centers were structured around pivotal organizations such as university hospitals and comprehensive cancer centers. As part of the stimulation program a locoregional network model was introduced within each center for the Development of Pal- liative Care to integrate palliative care services in the Dutch health care system. Objective: We performed a study on network formation in the southwestern area of The Netherlands with 2.4 million inhabitants. The study aimed to answer the following questions: (1) how do networks in palliative care develop, which care providers participate and how do they function? (2) which are the achievements of the palliative care networks as perceived by their participants? (3) which are the success factors of the palliative care networks according to their participants and which factors predict the achievements?. Design: Between September 2000 and January 2004 eight local palliative care networks in the region of the Center for Development of Palliative Care-Rotterdam (southwestern area of The Netherlands) were closely followed to gain information on their characteristics and de- velopmental course. Measurements: At the start of the study semistructured interviews were held with the co- ordinators of the eight networks. The information from these interviews and from the net- work documents were used to constitute a questionnaire to assess the opinions and experi- ences of the network participants. Results: According to the vast majority of responders, the most important reason to install the networks was the lack of integration between the existing local health care services. The networks were initiated to stimulate mutual collaboration, improve accessibility to health care services and increase the quality of these services. The most important achievements obtained by the palliative care networks were: increase in personal contacts between colleagues in a 1 Institute for Health and Environment Issues/IGO, Schijf, The Netherlands, Nursing and Reactivation Center An- tonius IJsselmonde, Rotterdam, The Netherlands. 2 Erasmus MC-Daniel den Hoed Cancer Center, Rotterdam, The Netherlands. 3 Helen Dowling Institute, Utrecht, The Netherlands. 4 Nursing Center Swinhove, Zwijndrecht, The Netherlands Albert Schweitzer Hospital ‘Amstelwijck’, Dordrecht, The Netherlands 5 University of Tilburg, The Netherlands, Institute for Health and Environment Issues, Schijf, The Netherlands.

Transcript of Function of Local Networks in Palliative Care: A Dutch View

Page 1: Function of Local Networks in Palliative Care: A Dutch View

808

JOURNAL OF PALLIATIVE MEDICINEVolume 8, Number 4, 2005© Mary Ann Liebert, Inc.

Function of Local Networks in Palliative Care: A Dutch View

C.V.M. VAHEDI NIKBAKHT-VAN DE SANDE, M.A.,1 C.C.D. VAN DER RIJT, M.D., Ph.D.,2A. Ph. VISSER, Ph.D.,3 M.A. TEN VOORDE, M.A.,4 and J.F.A. PRUYN, Ph.D.5

ABSTRACT

Background: Although network formation is considered an effective method of stimulatingthe integrated delivery of palliative care, scientific evidence on the usefulness of network for-mation is scarce. In 1998 the Ministry of Health of The Netherlands started a 5-year stimula-tion program on palliative care by founding and funding six regional Centres for the Devel-opment of Palliative Care. These centers were structured around pivotal organizations suchas university hospitals and comprehensive cancer centers. As part of the stimulation programa locoregional network model was introduced within each center for the Development of Pal-liative Care to integrate palliative care services in the Dutch health care system.

Objective: We performed a study on network formation in the southwestern area of TheNetherlands with 2.4 million inhabitants. The study aimed to answer the following questions:(1) how do networks in palliative care develop, which care providers participate and how dothey function? (2) which are the achievements of the palliative care networks as perceived bytheir participants? (3) which are the success factors of the palliative care networks accordingto their participants and which factors predict the achievements?.

Design: Between September 2000 and January 2004 eight local palliative care networks inthe region of the Center for Development of Palliative Care-Rotterdam (southwestern area ofThe Netherlands) were closely followed to gain information on their characteristics and de-velopmental course.

Measurements: At the start of the study semistructured interviews were held with the co-ordinators of the eight networks. The information from these interviews and from the net-work documents were used to constitute a questionnaire to assess the opinions and experi-ences of the network participants.

Results: According to the vast majority of responders, the most important reason to installthe networks was the lack of integration between the existing local health care services. Thenetworks were initiated to stimulate mutual collaboration, improve accessibility to health careservices and increase the quality of these services. The most important achievements obtainedby the palliative care networks were: increase in personal contacts between colleagues in a

1Institute for Health and Environment Issues/IGO, Schijf, The Netherlands, Nursing and Reactivation Center An-tonius IJsselmonde, Rotterdam, The Netherlands.

2Erasmus MC-Daniel den Hoed Cancer Center, Rotterdam, The Netherlands.3Helen Dowling Institute, Utrecht, The Netherlands.4Nursing Center Swinhove, Zwijndrecht, The Netherlands Albert Schweitzer Hospital ‘Amstelwijck’, Dordrecht,

The Netherlands5University of Tilburg, The Netherlands, Institute for Health and Environment Issues, Schijf, The Netherlands.

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INTRODUCTION

THE WORLD HEALTH ORGANIZATION (WHO) de-fines palliative care as, “an approach that im-

proves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the preventionand relief of suffering by means of early identifi-cation and impeccable assessment and treatmentof pain and other problems, physical, psychoso-cial and spiritual.”1 Palliative and hospice careinitiatives began in several European countries inthe late 1960s.2

The first initiatives differed in style and char-acter. St. Christopher’s Hospice in South Londonwas the first hospice in which scientifically basedmedicine was aimed to be integrated with tenderloving care for terminally ill patients. This pal-liative care approach influenced the founding ofnew hospice palliative care services. Approxi-mately 10 years later, the so-called hospital-basedhome care was developed in Sweden. In the1980s, the first palliative home care services wereset up in Italy. Germany took the initiative toform hospital inpatient units. Spain and Belgiumdeveloped transmural palliative care services.

In The Netherlands, the nursing homes intro-duced palliative care approximately 30 years ago.However, structural integration of palliative carein the health care system was ignored until 1990.In 1991 the first hospice was opened. In 1998 theMinistry of Health started a 5-year stimulationprogram on palliative care by founding and fund-ing six regional Centres for the Development ofPalliative Care. These centers were structuredaround pivotal organizations such as universityhospitals and comprehensive cancer centers. Fi-nancial support was provided for research, edu-cational programs and innovative break through

projects within the health care system as a whole.As part of the stimulation program a locoregionalnetwork model was introduced within each cen-ter for the Development of Palliative Care to in-tegrate palliative care services in the Dutch healthcare system.3,4

Network policy

The government and the health care profes-sionals consider the development and establish-ment of locoregional networks to be of para-mount importance for optimal organization ofpalliative care. A network is defined as a local orregional association of institutions, organizationsand care givers aiming at the improvement ofquality of care.5 The government required that ex-isting health care structures be integrated in lo-coregional networks. Health care institutions andindividual caregivers within a network shouldoptimize cooperation by exchanging each other’sknowledge and experience as well as proposalsfor efficient organization of palliative care. Hence,prompt and adequate availability of high-stan-dard patient-tailored palliative care provisionsmust be the essential outcome of network forma-tion.

Internationally, locoregional network forma-tion is also considered to be an important tool tofacilitate the delivery of palliative care. TheUnited Kingdom governmental health policy in-cluded the concept of networks as the key orga-nizational element in cancer care.6 The 34 cancernetworks in England and Wales focus on the de-velopment of strategic service delivery plans,identifying resource use, allocation and short-falls. Alongside the cancer networks, the NationalCouncil for Hospice and Specialist Palliative CareServices promoted the development of “support-

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region, improved engagement and collaboration between participating organizations, en-hanced insight in the health care provisions, joined initiatives for the development of newcare products, and organization of patient-tailored care. Important success factors for the net-works were deemed: fruitful mutual contacts, regular funding and the collective developmentof care products. By logistic regression analyses, the collective development of new care prod-ucts and the organization of case discussions between caregivers from different health careservices turned out to be the most important predictors for success of the palliative care net-works.

Conclusions: Projects that stimulate the communication between professionals appear toimprove the mutual collaboration between individual participants and between the partici-pating organizations, which consequently enhances the quality of palliative care.

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ive and palliative care networks” to integrate pal-liative care services more closely with each otherand the national health service.6–8

In New Zealand palliative care services havebeen developed in regional areas. The IpswichPalliative Care Network model has shown the im-portance of engaging both local community andhealth authorities. The key elements for the suc-cessful development of these networks were theregional strategic planning, the fostering of asense of community ownership, service integra-tion and the active promotion of the central roleof the general practitioners in the care for dyingpatients.9

However, although the formation of locore-gional networks is thought to be important forthe integrated delivery of palliative care, scien-tific evidence on the usefulness of network for-mation is scarce. Studies on the conditions for pal-liative care networks to be successful and studieson the outcomes of networks are eagerly awaited.

We performed a study on network formationin the southwestern area of The Netherlands with2.4 million inhabitants. The study aimed to an-swer the following questions:

1. How do networks in palliative care develop,which care providers participate and how dothey function?

2. Which are the achievements of the palliativecare networks as perceived by their partici-pants?

3. Which are the success factors of the palliativecare networks according to their participantsand which factors predict the achievements?

METHODS

Between September 2000 and January 2004eight local palliative care networks in the regionof the Center for Development of Palliative Care-Rotterdam (southwestern area of The Nether-lands) were followed closely to gain informationon their characteristics and developmentalcourse. Two of these networks joined later in thestudy period. At the start of the study semistruc-tured interviews were held with the coordinatorsof the eight networks. The written versions of theinterviews were returned to the coordinators forapproval. The information from these interviewsand from the network documents were used toconstitute a questionnaire to assess the opinions

and experiences of the network participants. Thequestionnaire comprised more than 200 questionswith respect to structure, process and outcomemeasures of the networks. Questions with respectto the structure referred to demographic charac-teristics, history, start, developmental stage, re-sources and the participating institutions and or-ganizations of the networks. Questions concern-ing the process included items on organizationand management, cooperation and external rela-tionships. Outcome measures referred to sharedobjectives and perceptions, the demand for care,the quality of cooperation, the improvement ofcare services, achieved agreements, results asso-ciated with individual participants, patients andorganizations, expertise and funding.

Sampling

The network coordinators were asked to list allindividuals, who could be assumed to be activeparticipants at the levels of higher and middlemanagement as well as caregivers. The question-naire was sent by mail to all 92 people. Sixty-onequestionnaires were returned (response 66%), buttwo of these contained less than 20% of questionsanswered and were therefore unevaluable. Table1 shows the responses per network.

The response rate varied from 60%–100% withthe exception of one network which scored below50%. The questionnaires were answered in a bal-anced and representative way by participants athigher and middle management levels as well asby caregivers (Table 2).

Analysis

Statistical analysis was performed using thecomputer program SPSS (SPSS, Inc., Chicago, IL).

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TABLE 1. SAMPLE SIZE AND RESPONSE PER NETWORK

Sample size ResponseNetwork n � 92 n � 61

Network A 4 4 (100%)Network B 6 6 (100%)a

Network C 6 4 (67%)Network D 19 9 (47%)Network E 7 6 (86%)Network F 39 25 (64%)a

Network G 11 7 (64%)Total 92 61 (66%)

aIn network B and F, respectively, one questionnairecontained less than 20% questions answered, renderingthese two unevaluable.

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In order to answer the first question: “How donetworks in palliative care develop, which care-givers participate and how do they function,? se-lected items from the questionnaire were sum-marized. For the second question, “Which are theachievements of the palliative care networks asperceived by their participants,?” principal com-ponent analysis (PCA) was used on relevantitems in the questionnaire to form scales of theachievements of the networks. The scales foundby PCA were supplemented with single outcomevariables at item level. Index scores were calcu-lated to determine which results were consideredthe most important by the responders.10 For thecalculation of an index score, the average score ofan item was multiplied by the percentage of re-sponders in agreement about that item 0.1 times.To answer the third question, “Which are the suc-cess factors of the palliative care networks ac-cording to their participants and which factorspredict the respective achievements,” the re-sponders could indicate a total of 22 putative suc-cess factors. PCA was used to form scales and in-dex scores were calculated. The possible successfactors found by PCA, were supplemented withpossible predictors of the achievements of net-works at item level. Finally, multiple regressionanalyses were performed according to the Entermethod to find independent predictors for thedifferent outcome measures of the networks. Thesuccess factors that were entered in the regres-sion analysis were based on results of univariatecorrelation analysis and theoretical plausibility.

RESULTS

Network characteristics

According to 79% of the responding networkparticipants, the most important reason to start anetwork was the lack of integration between theexisting local health care services. Only a few re-

sponders considered the incentive by the gov-ernment for palliative care as a cause. In the opin-ion of the majority of responders, networks wereformed with different aims, in particular to en-hance mutual cooperation and to improve acces-sibility to and quality of health care services. Thecommon notion was that networks were devel-oped both bottom-up and top-down. The mostfrequently mentioned initiator(s) were the nurs-ing home, the hospital, the local council, the Cen-ter for Development of Palliative Care—Rotter-dam, and an individual trendsetter. The numberof participating organizations varied from a fewto approximately 20. The backbone of the net-work organization was consistently formed by ahospital, a nursing home, a home care organiza-tion, the local association of general practitionersand, if present, a hospice. The stages of matura-tion of the networks varied. In the more advancednetworks, participating organizations formalizedthe organizational structure by a collaborationagreement. Management was sometimes coher-ently organized at strategic, tactical and opera-tional levels. In one example, policy-makersformed the strategic think-tank to evaluate andinfluence the development of the network. Theyalso signed the collaboration contract. Selectedmanagers of the participating organizations inthis network formed the steering committee,which made decisions on the directions and ac-tivities of the network. The working groups werelargely formed by caregivers. Each workinggroup was given a specific task.

Because regular funding for network coordi-nation and for specific network activities was notyet available at the time of the study, the partic-ipating organizations shared the costs. In eachnetwork one person had adopted the leading role.Usually this was the appointed coordinator. Intwo networks, participants deemed the progressin achievements insufficient, because of poor sup-port from the local health care organizations, un-satisfactory involvement of crucial organizationsand the lack of an accurate inventarory of localprerequisites. Approximately half of the respon-ders indicated that, network participants jointlydeveloped specific care products and stimulatedpalliative care. Most networks organized a mul-tidisciplinary palliative care consultation team tosupport caregivers in case of difficult problems.11

In addition, the networks organized case discus-sions for network participants, provided a pal-liative kit, established a list of relevant health care

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TABLE 2. DISTRIBUTION OF RESPONDERS ACCORDING TO

PROFESSIONAL POSITION

Sample size RespondersType position n � 92 n � 59

Higher management 17 (18.5%) 11 (18.6%)Middle management 34 (36.9%) 24 (40.%)Caregivers 40 (43.%) 23 (39.0%)Unknown 1 (1.1%) 1 (1.7%)

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services, made brochures, a website, protocols,manuals and checklists. Usually, these productswere developed in working groups using a the-matic approach.

Network achievements

By PCA on 66 questionnaire items about net-work achievements, seven scales were formed.These seven scales were supplemented with ninesingle variables at item level. The differentachievements as given by scales, single item vari-ables, and calculated index numbers are pre-sented in Table 3.

In the opinion of the responders, the most im-portant achievement was the increase in personalcontacts within the network (i.e., contacts with col-leagues and other professionals from the partici-pating organizations). At the personal level theycommunicated with each other more easily, theycollaborated more frequently and exchangedknowledge and skills. The second most importantachievement was the increase in mutual engage-ment and collaboration between the parties of the

networks. Parties worked more complementary inconcerted action. Mutual understanding, confi-dence and trust formed the basis for flexible and ef-fective collaboration. Third, the responders ascer-tained that the insight in the available health careservices had been improved. The fourth majorachievement was that network paries were onspeaking terms more conveniently. Of note,whereas the first listed achievement concerns thepersonal level, this outcome refers to the level of par-ties. Conflicts were resolved sooner and new prod-ucts were developed by the network organizationscooperatively. For the remaining 11 achievements,we refer to Table 3. In summary, the respondentsfeel that patients should have different options forcare facilities and they observe that care is gradu-ally being organized in a patient tailored way.

Perceived success factors of networks

Table 4 summarizes the perceived networks’success factors, the percentage of responders whoconsidered a given factor as a success factor, andthe corresponding index scores.

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TABLE 3. NETWORK ACHIEVEMENTS

Achievements Index

Increase in personal contacts within the network (0.76) 17.20more cooperation; learning from each other

Increase in mutual engagement and collaboration (0.86) 14.32working more complementary; more concerted action; increase in support and mutual trust

More transparent care services 13.56Parties on speaking terms more conveniently (0.63) 13.30

better contacts; quicker settlement of conflicts; product developmentBetter agreement between referring parties and the network concerning 11.87

assignment of tasks and functionsPlacing the patient and the demand for care in a more central position (0.92) 11.58

more options; easier accessibility; geared care giving; increase in quality of careDecreased opposition between parties in the network 11.14Arrangement of care more geared 10.27Decrease in impediments for starting a network 10.19Common view on palliative care 10.19Cooperative development of products and initiatives 10.01Increased personal expertise and mutual understanding (0.63) 9.84

developing skills; increased insight in problems of other care workers andincreased empathy for referring parties

Improved multidisiplinarity (0.88) 8.85more teamwork; exchange of experiences

Increase in cooperation and dynamics (0.76) 7.47less competition; greater interdependence; more negotiation; interest in network dominantover organization

Professionals in the network taking more care of each other 4.34Fewer and shorter waiting lists for access to palliative care 3.77

aWhen principal component analysis (PCA) was used to form scales, the Cronbrach’s � is presented between brackets.

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The responders considered “satisfactory mu-tual contacts” as the most important success fac-tor for the network, followed by regular fundingof the network. Thirdly, the cooperative devel-opment of products or incorporating existing(personal) products was highly valued. Compe-tition was not considered to be influential. PCAwas carried out on these perceived success fac-tors and five scales were formed.

Predictors of network achievements

Multiple regression analyses were used to de-termine independent predictors for the variousachievements of palliative care networks. The listof possible success factors found by PCA wassupplemented with other possible predictors ofthe achievements of networks at item level. Fac-tors were entered in the multiple regressionanalyses only when univariate analysis indicateda correlation and the relationship appeared theo-retically plausible. For the 16 outcome character-istics a total of 12 predictors were found. The pre-dictors could be subdivided in predictorsconcerning the activities of the networks, per-

sonal attitude and satisfaction, respectively. Todate, the organization of case discussions is a pre-dictor concerning the activities of the network.For the 16 different achievements of palliativecare networks, Table 5 gives the predictors as de-termined by multiple regression analyses withthe corresponding R2 values.

The most important outcome characteristic‘increase in personal contacts within the net-work’ could be predicted by the degree of effi-cacy (i.e., the extent in which the network par-ticipant feels him/herself capable of making afavorable contribution to the development ofthe network to which he/she belongs). Themost frequently found predictors for the dif-ferent network achievements were the plan-ning of specific improvement routes and the or-ganization of case discussions within thenetwork. Both factors are associated with con-certed learning. Two other important predic-tors were the degree to which agreement wasreached on measures to guarantee the continu-ity of care and the degree of satisfaction con-cerning the accuracy of decision-making withinthe network.

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TABLE 4. FACTORS THAT, IN ORDER OF IMPORTANCE, INFLUENCE THE SUCCESS OF THE NETWORK WITH THE PERCENTAGES

OF RESPONDERS IN AGREEMENT WITH THE LISTED FACTOR AND THE CORRESPONDING INDEX SCORES

Nr. Factors greatly influencing success Percentage Index

1. Satisfactory mutual contacts 85% 35.702. Regular funding for the network 76% 30.063. Cooperative development of new products or incorporating 64% 23.85

existing products4. Taking criticism seriously 60% 21.845. Having a sense of solidarity 58% 20.206. Attaching importance at the operational level/day to day tasks 56% 19.267. Writing a project proposal 55% 19.138. Undertaking public relations activities 55% 18.879. Allowing initiatives from the parties 53% 18.43

10. Presence of a policy maker 52% 18.1711. Presence of a leader 44% 14.1712. Organizing a start 39% 11.7913. Starting with only a small number of parties 38% 11.1014. Division between strategic and operational level 32% 10.0515. Absence of parties with much power 33% 9.7916. Presence of parties with much power 30% 8.7317. Yielding part of the autonomy 28% 7.7518. Starting with as many parties as possible 27% 7.4219. Participating in (registration of) the Center for Development 26% 6.81

of Palliative Care—Rotterdam20. Absence of mutual competition 26% 6.6321. Presence of mutual competition 20% 5.1822. Participating in (registration of) the project group for the 13% 2.76

Integration of Hospices

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CONCLUSION

In several countries palliative care networkshave been established to improve the cooperationbetween the stakeholders, with the goal to im-prove the quality of care for patients with life-threatening disease. According to the opinion ofnetwork participants in this study, network for-mation indeed results in more effective collabo-ration and enhanced quality of palliative care. It

appears that the most important achievement forparticipants is the increase in personal contacts inthe network. It is likely that communication andinformation are important contributing factors.The most important predictors of the networkachievements referring to collaboration were theplanning of specific improvement routes and theorganization of case discussions. They serve as aguiding principle for the networks and are the ba-sis for “concerted learning” in the field of pallia-

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TABLE 5. PREDICTORS OF THE ACHIEVEMENTS OF NETWORKS

Achievemens Predictorsa

Increase in personal contacts within the network Efficacy, feeling capable of making aR2 � 0.364 favorable contribution to the development

of the network (0.87)Increase in mutual involvement and collaboration Planning specific improvement routes

R2 � 0.598Care services being more transparent Planning specific improvement routes

R2 � 0.548Parties on speaking terms more conveniently Arranging case discussions

R2 � 0.630 Presence of a leaderPlanning specific improvement routes

Better agreement between referring parties and Planning specific improvement routesthe network concerning assignment of tasks Satisfaction about speed of decision makingand functionsR2 � 0.510

Placing the patient and the demand for care in a Factor “conditions for collectivity”: (0.64)more central position attaching importance at operational levelR2 � 0.419 developing products and initiatives together

receiving regular fundingReaching agreement on guaranteeing

continuity of careDecreased opposition between parties in the Putting cooperation agreements on record

network Planning specific improvement routesR2 � 0.292

Arrangement of care more geared Manner of materializationR2 � 0.766 Satisfaction about speed of decision making

Reaching agreement on guaranteeingcontinuity of care

Putting cooperation agreements on recordDecrease in impediments for starting a network Planning specific improvement routes

R2 � 0.685 Manner of materializationCommon view on palliative care Planning specific improvement routes

R2 � 0.378 Attitude towards networksCooperative development of products and initiatives No significant predictorsIncreased personal expertise and mutual understanding Agreements made on guaranteeing

R2 � 0.494 continuity of careImproved multidisciplinarity Satisfaction about speed of decision making

R2 � 0.599Increase in cooperation and dynamics Having a view on palliative care

R2 � 0.395Professionals in the network taking more care of Arranging case discussions

each other Agreements made on guaranteeingR2 � 0.572 continuity of care

Presence of policy documentFewer and shorter waiting lists for access to Planning specific improvement routes

palliative careR2 � 0.272

aWhen principal component analysis (PCA) was used to form scales, the Cronbrach’s � is presented between brackets.

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tive care. Specific improvement routes and casediscussions enable caregivers from different dis-ciplines to meet and reduce the barriers that ex-ist between different disciplines and organiza-tions. By “concerted learning” the participantsmay gain more knowledge and insight resultingin a higher standard of work. Maybe, learning caneven lead to more job satisfaction and lessburnout. Moreover, “concerted learning” couldproduce a stronger sense of solidarity and self-esteem when one is recognized as a member of agroup that delivers highly valued care based onexpert know-how. When the development of thissense occurs in an open atmosphere, further dis-cussions may follow with respect to the personalideas on the realization of palliative care in allthree WHO-defined dimensions.

The central role of patients and their relativesis pivotal in palliative care. In the opinion of thenetwork participants the quality of palliative carecan be improved by the formation of networks.However, the perceptions and opinions of pa-tients, relatives and treating caregivers have notyet been studied.

A recent Dutch study, which was performed ina heterogeneous group of people working in pal-liative care, showed that the notion about of theconcept quality varied widely between differentdisciplines (e.g., between managers and care-givers).12 Consequently the opinions of networkparticipants cannot be extrapolated to patients,relatives, and treating caregivers. More researchis needed to elucidate their opinions on qualityin palliative care.

Notwithstanding the fact that this study in-cluded several objective variables, such as thepresence of a policy document, the appointmentof a network coordinator, the geographical loca-tion of the network and the organization of casediscussions, the results are still based on the opin-ions of the network participants who filled outand returned the questionnaire. Although the re-sponse rate of 66% is quite high in comparison tosimilar surveys in the health care sector, the opin-ions of responding participants may differ fromthose who did not return the questionnaire. For-tunately, the professional background distribu-tion of the responders was similar to that of thewhole group to which the survey was sent. In ad-dition, a telephone inquiry showed that a lack oftime was the most important reason for not fill-ing out the questionnaire, possibly because of itslength. Therefore, we believe that the group of re-

sponders is representative of the whole group ofnetwork participants. Of note, when interpretingthe results, one must be aware of the dominantposition of one of the networks, which contrib-uted 40% of the responders. This network wasformed during the study period by a merger oftwo networks.

This study has been performed in the south-western part of The Netherlands with 2.4 millioninhabitants. In theory, the results may not be gen-eralized to other Dutch or foreign networks, be-cause the organizational culture in the south-western part of The Netherlands may differ fromthat in other regions or countries. In 2002, a smallsurvey was held among the coordinators of tenpalliative care networks in the region of Amster-dam with a comparable population size. The re-sults were similar to the results described in thisreport. Moreover, a study from the United King-dom also demonstrated the importance of imple-menting effective communication in networks tobridge the gap between the many involved orga-nizations.6 A study in New Zealand underscoresthe central role of the general practitioners in net-works. In The Netherlands the general practi-tioner usually is the main care provider for pa-tients who receive palliative care at home.However, in the first year of our study, their ac-tive participation in the networks was somewhatlimited, because of other priorities.

In summary, research on palliative care net-works can increase our knowledge about thefunction and role of these networks. In the opin-ion of network participants, projects that stimu-late the communication between health care pro-fessionals will improve the mutual engagementbetween individual participants and between theparticipating organizations, thereby improvingthe quality of palliative care. More researchamong professional and non-professional usersof these networks is needed to underpin networkpolicy more scientifically.

ACKNOWLEDGMENTS

The authors are grateful to the network coor-dinators and participants for their invaluable con-tribution to this research.

The authors would also like to thank the fol-lowing persons for their critical scrutiny of thepreliminary versions of the questionnaire: H.Bussemakers, M.A. (Bureau Bussemakers / STG-

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Health Management Forum); T. Koks, M.A. (Can-cer Centre South); A. Maas, Ph.D. (Erasmus Uni-versity Rotterdam); M.N.M. Scholten, M.A.(KVV/Antonius IJsselmonde); and A. Stoppelen-burg, M.A. (AGORA).

This research has been performed on the au-thority of the Center for the Development of Pal-liative Care -Rotterdam (COPZ-R) by the Institutefor Health and Environment Issues (IGO), andsubsidized by the Dutch Ministry of Health, Wel-fare and Sport (VWS).

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Address reprint requests to:Monique Vahedi Nikbakht-Van de Sande

Institute for Health and Environment Issues / IGOHoeksestraat 264721 SP Schijf

The Netherlands

E-mail: [email protected]

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