Putting Participation into Practice

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  • SA Fam Pract 2004;46(5) 31

    INTRODUCTION ANDBACKGROUNDDifferent models of participation inthe doctor-patient relationship havebeen described in the past. Szaszand Hollenders models are wellknown and include the activity-passivity model, the guidance-cooperation model and the mutualparticipation model.1 Mutual partic-ipation as the basis of the doctor-patient relationship has been theideal for many years and is recom-mended by many role models infamily medicine and primary care.1,2

    Another way to look at mutual par-ticipation is to see the doctor-patientrelationship as a partnership.3 In

    terms of this partnership, the doctorand patient share decision makingand responsibilities.4 In contrast tothe mutual participatory model is theactivity-passivity model (or non-participation), according to whichthe clinician gives the instructionsand the patient only has to comply.1

    The literature now supports a linkbetween patient participation andimproved health outcomes.5,6,7,8,9

    Laine even argues that, as physi-cians, we are ethically bound to usethis model because of its positiveeffects on health outcomes.10 Otherconcepts that are linked to improvedhealth outcomes are self-care, self-sufficiency and the patients ability

    to take responsibility for their ownhealth care, to participate in healthactivities and to see themselves aspartners in the therapy.3,9,11,12 Thisexplains why primary care workersshould actively apply mutual partic-ipation when working with patients.

    I work in a remote health centrein the Greater Tzaneen Municipalityof the Limpopo Province of SouthAfrica. I want to share the results ofa research project in which I partic-ipated in this rural area. I asked fourof my regular patients with seriousincurable illnesses to participate.The aim of the study was to developa mutual participatory doctor-patientrelationship model, and to learn how

    Marincowitz GJO, MBChB (UFS), M Fam Med (Medunsa), MD (Medunsa)Department of Family Medicine and Primary Care, Limpopo Province Unit,

    Medical University of Southern Africa (Medunsa)

    Correspondence: Dr G Marincowitz, Department of Family Medicine and Primary Care, POBox 222, Medunsa, 0240, South Africa, e-mail: rhinorth@mweb.co.za

    Keywords: participatory action research, primary care, mutual participation

    SUMMARY

    Background: The aim of the article is to share the findings of participatory action research performed to developa mutual participatory doctor-patient relationship model, and to apply this model in a rural cross-cultural primarycare setting.

    Method: Participatory action research was performed with four patient groups. Four patients with incurable illnessesformed groups with their family members and significant others. Seven monthly meetings with each group wereaudio recorded. The question asked at each meeting was How can the group work together to achieve the bestpossible health outcome for the patient?. The recorded interviews were transcribed and translated from the localvernacular (Tsonga) into English. Themes were identified from the transcripts, field notes and a reflective diary.A list of combined themes was compiled and a model was constructed to depict the themes and their interrelatedness.The model was interpreted and conclusions were drawn.

    Results: To apply a mutual participatory model in a rural cross-cultural practice, the physician is required to operatefrom certain basic tenets. The patients have to participate actively to benefit optimally, and basic interviewingtechniques are helpful to facilitate mutual participation.

    Conclusions: It is not easy to implement a mutual participatory model in a disadvantaged, rural practice, but itis possible. We need a paradigm shift in health care, from helping patients (which may nurture dependence),towards facilitating the personal growth and development of patients (to nurture self-reliance).

    (SA Fam Pract 2004;46(5): 31-36)

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    Putting Participationinto Practice

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    SA Fam Pract 2004;46(5)32

    to apply this model in a rural, cross-cultural primary health care setting.I believe the participation modeldeveloped and described for patientfamily groups is transferable andapplicable to the doctor-patient re-lationship. Some of the findings ofthis study were generated from myreflective diary and are thereforepersonal. When discussing my per-sonal reflections in reference to cur-rent academic literature, I will refer

    to myself in the first person. Writtenconsent was obtained from all theparticipants, as well as from theResearch, Ethics and PublicationsCommittee of Medunsa and the Lim-popo Provincial Department ofHealth and Welfare.

    METHODParticipatory action research (PAR)was undertaken with four patientgroups. Patients with serious incur-

    able illnesses formed groups withtheir family members, the home-based care worker caring for themand some close friends. Seven meet-ings with each group were audiorecorded over the research periodof six months. On the patients re-quest, the meetings were held intheir respective homes and the lan-guage spoken was the local vernac-ular, Tsonga. The question at eachmeeting was How the can the group

    POSITIVE

    EFFECT

    NEGATIVE

    TENETS

    ACTIVITY

    TECHNIQUES

    EFFECT

    Health workers (including the family physician/researcher)

    Basic tenets for the family physician:A family physician needs to: Take a holistic view of illness. Focus on the personal growth and development of the patient. Understand the personal gains connected to helping patients. Understand the effect of status and education on the relationship

    between a family physician and his/her patients.

    Maintain relationships. Confirm and respect the participants (especially the patients) values,

    opinions, actions and abilities. Provide encouragement and support. Focus on the patients responsibility. Focus on what is possible and what is positive It gives hope. Encourage truthfulness, honesty and openness. Raise awareness about unresolved conflicts and concerns. Focus on religion, prayer and trust in God.

    I, as the researcher, used a number of interviewing techniquesto encourage contributions in the meetings: Asked for clarification Gave reflective summaries Encouraged the asking of questions Provided summaries of the previous meetings.

    Techniques that were specifically important include the following: I motivated and encouraged all participants to participate in the

    meetings by repeatedly asking about their opinions, ideas,suggestions, plans and solutions.

    I acknowledged the pain and gave the patients the opportunity toventilate their concerns about and experience of the pain.

    I gave choices to the patients. When plans were formulated, I focused on actions, solutions and

    concrete plans with short-term objectives. The participation in the group, cooperation and the implementation

    of plans were negotiated. Feedback was given about the implementation of action plans.

    Ignore cues. Incongruence. Nurturing dependence. Being different. Being neutral. Negative feelings. Blaming the patient.

    Patient (including family)

    The patients expressed their ideas, wishesand plans, asked for explanation andclarification about their own role and askedfor opinions, ideas and solut ions.

    One patient expressed a strong desire to dothings for herself.

    The ability to take responsibility and make acommitment

    The ability to address conflict in the family(reconciliation).

    Disenabled. Focus on helplessness. Unwill ingness to take responsibil ity. Unresolved conflict in the family. Focus on outside solutions (sometimes

    unrealistic expectations). Fixation on the problem. Blaming another person. Defensiveness. Feelings of rejection. Passive resistance.

    Table I: Combined list of themes

  • SA Fam Pract 2004;46(5) 33

    Original Research

    work together to achieve the bestpossible health outcome for the pa-tient?. Each group was encouragedto give ideas on patient manage-ment. Action plans were formulatedand tried out. Decisions were madeafter consensus had been reachedby the whole group. The transcribedaudio recording of each meetingwas summarised and themes wereidentified through the cut-and-pastemethod on computer. Summariesand identified themes were verifiedwith the individual groups at thefollowing meeting. Minutes were keptby a group member and were readat the beginning of each meeting.Feedback on the effects of the im-plemented action plans was givenduring subsequent meetings, andthe effect of actions taken was alsodiscussed. The patients clinical con-dition was evaluated at each meet-ing, while the group also discussedthe effect of implemented (or non-implemented) action plans on thepatient as a whole. I made field notes(generally after the meetings) andkept a reflective diary during theresearch period. The group was fa-cilitated to continue generating moreideas and plans for action. This proc-ess continued for five meetings. Afterfour meetings it was noticed thatvery few new themes were generat-ed. What happened, however, wasthat the same themes were dis-cussed repeatedly, but on a signifi-cantly deeper level.

    The sixth meeting of each groupwas a free-attitude focus group in-terview. The purpose of this interviewwas to understand the groups per-ceptions regarding the effect of theparticipation process on the patientshealth. The results of these inter-views, as well as the results from allprevious meetings, were validatedwithin the different groups duringthe seventh meeting.

    A reflective diary was keptthroughout the research period torecord my thoughts on the researchmeetings. I documented communi-

    cations with others about the patientsand their illnesses, as well as mythoughts about the concepts andprocesses relevant to the researchtopic.

    One of the co-researchers (GSF)did three free-attitude interviews withmyself as the research facilitator.The purpose of these interviews wasto increase awareness about myperceptions regarding participationat different times during the researchperiod.

    The data was analysed as fol-lows: The recorded meetings wereall transcribed and translated intoEnglish from Tsonga. The analysedtranscripts of the meetings wereused to identify themes from theEnglish manuscript; these were thenverified with the Tsonga text. Thethemes in all the meetings were iden-tified with the cut-and-paste compu-ter method. The text was specificallysearched to identify themes thatdescribed action plans and themesdescribing participation. The partic-ipants could only be involved to thelevel of verifying and elaborating onthe summaries and themes from theinterviews in their own groups, asfurther analysis by them was hin-dered because of literacy and lan-guage barriers. Themes from thereflective diary and the three free-attitude interviews were also identi-fied through the cut-and-paste com-puter method.

    The transcribed records of themeetings were then re-analysed todescribe the process of each inter-action that took place during thedifferent meetings. The descriptionsof the interaction processes andthemes from the different patient-group meetings were combined withthe list of themes from the reflectivediary and free-attitude interviews.A combined list of themes was thuscreated.

    The combined list of themes wasused to construct a visual schematicmodel that demonstrates the interre-latedness of the different themes.

    The model was interpreted and con-clusions were drawn.

    RESULTSThe results are summarised in thecombined list of themes presentedin Table I. A model of the combinedlist of themes is depicted in Figure1, followed by a discussion of themodel. The discussion highlightssome differences between the find-ings of this research project and theliterature. The positive effect of supportiverelationships and the negative effectof conflict and distrust in relation-ships on health were suggested bymost of the participants. In eachgroup, the patients and family mem-bers repeatedly stated that the sup-port visits of the home-based careworker and the support they re-ceived during the meetings had apositive effect on their well-being.They repeatedly said these visitsmust continue. One family experi-enced heightened levels of internalconflict and a participant stated: Itis not going well with our sisterbecause there is no peace in thishouse.

    Certain basic tenets emergedthat would help the family physicianto implement a mutual participationmodel. The majority of these tenetswere identified during the analysisof the reflective diary. One of thesetenets is that, when patients abilitiesand contributions are respected andvalued, a positive effect on theirparticipation and their experienceof well-being can be identified. Otherimportant tenets include a prepared-ness to learn from patients, and be-ing aware that, as health workers,we also benefit from helping patients.It is necessary to have a holistic viewof medicine, to be aware of the lim-itations of Western medicine and toaspire for the personal growth anddevelopment of patients. Beingaware of the influence of status onthe therapeutic relationship helpedme to apply the mutual participation

  • SA Fam Pract 2004;46(5)34

    model. The health workers statusoften comes from his/her knowledgeand posit ion within society.

    The transcribed manuscripts ofthe group meeting were reviewed toidentify facilitation processes thatencouraged participation. Basic in-terviewing techniques, such as re-flection, summaries and giving op-portunities to ask questions, wereidentified as having impacted posi-tively on group participation. Fromthe manuscripts it became clear thatparticipation usually started after theparticipants had repeatedly beenasked for their ideas, opinions, sug-gestions and plans.

    Some of the actions of the care-taker team had a negative effect onthe participation and well-being ofthe patients. Examples of these in-clude ignoring cues from the patient,incongruent actions, nurturing de-pendence, being different from thepatient, a pretence of being neutral,negative feelings towards the patientand blaming the patient. One patiententered into a relationship with awoman against the advice of thegroup. None of the group were em-

    pathetic towards him, and all of themhad different views on the matter.Group members blamed him for thedecision and the subsequent dete-rioration of his health. In two of thegroups, group members who werenot family members took responsi-bility for providing food for thepatients. Those patients becamedependent on these contributions,which resulted in the patientsthemselves and their family mem-bers participating less during thediscussions.

    Active participation by the patientand his/her family, for example givingopinions, taking responsibility andtaking action to contribute to theirhealth, contributed to their overallsense of well-being. Open and hon-est discussion of concerns and un-resolved conflict, including attemptsto reconcile the issues, also had apositive effect on patients. One pa-tients daughter described the patientas stubborn because she wouldnot allow them to help her. Shewanted to do things for herself.Her ability to walk without supportgreatly improved over the research

    period. In one group, the patient wasreported to be better when he be-came actively involved in visitingother sick people with his friends. Inthe family mentioned earlier in whichconflict was experienced, the patientreported to be better after the eldestsister called the whole family togeth-er and discussed the conflict be-tween the patient and other familymembers. The family meeting tookplace after this sister honestly admit-ted that there was conflict in thefamily. During the last meeting withthis group, the participants reportedthat the patient was better becausethey had worked together as agroup. In three of the groups, partic-ipants reported improvements intheir sick family members who actedon the groups recommendations,e.g. attending church services.

    Attitudes of rejection, helpless-ness, being defensive, blaming oth-ers for their misfortune and beingdisenabled had a negative effect onthe well-being of patients. The patientwho had entered into a relationshipagainst the advice of the group feltrejected after the group confronted

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    Family

    Physician

    Family

    Physician

    Admit limits to medical careRepeatedly ask for opinionsAffirm patients valueFocus on the positive - HopeFocus on what is possibleShow respectNegotiate decisionsGive options and choicesAsk feedback re. actions

    Value patientHolistic view of health

    Self awarenessValue growth and

    developement (for patients)

    Disenabled and helplessTake no responsibilityRejected, defensive, blaming

    Take responsibilityHonest and open

    NurtureDependenceFocus onproblemsFeel selfhelplessIncongruent

    Figure 1: A model of the combined list of themes

  • SA Fam Pract 2004;46(5) 35

    Original Research

    him about his relationship. He react-ed by being defensive toward thegroup and blaming his ex-wife andchildren, who had subsequently lefthim, for his misfortunes. He statedhe was unable to do anything forhimself. After this incident, the pa-tients condition deteriorated rapidly.

    Discussion of Figure 1The patient is depicted in the homewith the family. The small arrow overthe patient indicates what the patientand family contribute to enhance theprocess of participation. The smallgrey arrow shows what makes par-ticipation difficult. The arrows alsosymbolise the effect on the healthof the patient. The untinted arrowssymbolise that which improves par-ticipation and health, while the greyarrows symbolise that which ham-pers participation and which is det-rimental to health and well-being.Everything that happens to the pa-tient involves relationships. This is avery central theme in the model, asindicated by the size of the letters.Supportive relationships have a pos-itive impact and relationships riddledwith conflict have a negative impacton patients. Reconciliation is a wayto change a conflictual relationshipto a supportive, nurturing one.

    The home-based care volunteer,the nurse, church members andneighbours surround the patient andthe family. The community at largeforms a second circle around thefamily nucleus. The health and wel-fare services, of which the familyphysician forms part, constitute theouter circle. The cloud callout showsthe tenets that would help a familyphysician and other health workersto implement a mutual participationmodel.

    The large arrow on the left dis-plays that which assists the healthworkers to implement this model.These aspects also have a positiveeffect on health. The big grey arrowon the right shows that which mayhamper the process.

    DISCUSSIONSeveral of the tenets that were men-tioned have been also mentionedby other authors. Tervalon and Mur-ray-Gracyia stress the importanceof humility and self-critique to redresspower imbalances between the doc-tor and patient 13. They also feel it isvery important for physicians to beaware of the position of power thatthey have over their patients, espe-cially with regard to the poor and ina cross-cultural setting. Brody statesthat an increased awareness of thelimitations of clinical medicine helpsthe physician to be less authoritative14. Illich argues that expanding therole of medicine decreases patientautonomy and that patients conse-quently become more dependenton medical care.15

    A number of specific techniqueswere helpful when applying the mu-tual participatory model. The moststriking of these techniques was thatI, as the research facilitator, repeat-edly asked the participants and pa-tients their opinions. In many instanc-es, the participants initially answeredthat they had no input to make, butlater started to contribute. I came tothe conclusion that communicationin the rural, disadvantaged societyin which the study was performedoperates in a circular or spiral patternand not in a linear manner, as istypical in Western communication.The communication builds as it goesin circles. I found a similar patternin the development of themes in thedifferent meetings. During mostmeetings, the same themes werediscussed repeatedly, but the depthincreased. Joyce Scott describes asimilar phenomenon in her bookTuning in to a different song, aboutAfrican worship songs.16 She de-scribes how African worship songsare mostly repetitive in nature, where-as Western songs concentrate moreon content in a linear and non-repetitive way. She believes that thedifference between the two para-digms is that Western worship songs

    focus mainly on the theological con-tent, whereas African worship songsfocus on experiencing the meaning-fulness of the song. I found that thisdescription clarifies the differencesin communication between peoplefrom African and Western cultures.The only way I could attain partici-pation was by repeatedly asking foropinions. I was not able to persuadeparticipants to participate by askingthem once. It was as if the partici-pants wanted to be sure I really want-ed their participation and truly valuedtheir opinions. Brody makes the pointthat persistence may be necessaryto reassure the patients that theircontributions are appreciated andvaluable.14

    The techniques to enhance par-ticipation described in this study areechoed in other articles. Chewningand Sleath describe how givingchoices in treatment options is animportant step towards collaborationin the client-centred model.11 Perl-muter and Langer also found thatproviding choices gives patients asense of control.17

    A theme that repeatedly emergedwas the need to encourage and sup-port patients through compassionand respect. I felt this enabled thepatients to participate more fully. Thebeneficial effect of support has beenwidely recorded.18,19

    I believe the most important as-pect from the patients perspectiveis for them to take personal respon-sibility and commit themselves toparticipate positively in their ownhealth. Supporting this view, Solo-mon et al. describe having a senseof responsibility as one of the factorsassociated with longevity in AIDSpatients.9 In their Hardiness inHealth study, Kobasa et al. foundcommitment to be one of the threebasic components of resilience inhealth.20 Greenfield et al. found thatpositive participation correlated withgood health outcomes.6 Solomon etal. found that taking responsibilityand the ability to view the physician

  • SA Fam Pract 2004;46(5)36

    as a collaborator were associatedwith good health outcomes in thepatient.9

    Through the reflective processesof this research, I rediscovered formyself the immense value of an an-cient truth, namely the importanceof believing in the inherent value ofall people (including patients) andrespecting them for that. Personally,I feel this is the very essence of thedoctor-patient relationship (or anyhelping relationship). Without thisvalue, any attempt to establish ahelping relationship will be futile andhypocritical. To value and respectothers should always be possible,even if we work under the most in-adequate circumstances. I feel thisvery essential truth has lost its im-portance as a result of the technicaldevelopments in biomedicine.

    It was not easy to implement amutual participation model in a ruralcross-cultural setting in which mostpatients are disadvantaged, and itrequired commitment and persever-ance from all the members of theteam, including myself. Laine10 andTervalon and Murray-Garcyia13 haveconfirmed the difficulties associatedwith this process, but also stress itsimportance. I believe the major diffi-culty in implementing this model wasdue to the imbalances in personalpower and status.

    Ideally, in the process of partici-patory action research, all partici-pants should be co-researchers andshould participate at all levels of theresearch.21 Unfortunately, none ofthe participants was able to speakor write English. They consequentlycould not participate in the analysisand documentation of the research.However, those who were able towrite participated in collecting datain the vernacular (Tsonga).

    CONCLUSIONIt is not easy to implement a mutualparticipation model in a disadvan-taged, rural practice, but it is possi-

    ble. As family physicians and healthworkers, we need a paradigm shiftin health care: from helping patients(which may nurture dependence)towards facilitating the personalgrowth and development of patients(to nurture self-reliance).

    It is important that a mutual par-ticipation model should be imple-mented in daily practice when train-i n g u n d e r g r a d u a t e a n dpostgraduate generalist physiciansand other health workers.

    ACKNOWLEDGEMENTSI wish to acknowledge all the co-researchers in this study and thankthem for the important role theyplayed. The co-researchers wereProf. GS Fehrsen of the Departmentof Family Medicine and PrimaryCare, Medunsa, Prof. JB Schoemanof the Department of Psychology,University of Pretoria, Mrs A Dzimbiri,a home-based care worker fromNkambako Village, Tzaneen, Ms MManganyi and her family membersfrom Nkambako Village, Mr RMboweni and his family membersfrom Jopie Village, Tzaneen, Mr MSMasinge and his sister, friends andneighbours from Nkambako Village,and Mrs M Malungana and her familymembers, also from NkambakoVillage.

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