1. Consolidarea relaţiei medic-pacient (health care practitionner)
This presentation has been produced as part of the Women for Positive Action initiative. Women for Positive Action aims to empower, educate and support women with HIV and the healthcare providers who treat them
These slides overview the importance of a positive, supportive relationship between women and their healthcare providers and recommend how to establish such a rapport
The Women for Positive Action educational slide kits are intended for use by healthcare professionals, community representatives and patients who want to create or participate in learning opportunities relating to improving the care of women living with HIV.
If you have any questions about WFPA and sponsorship please the WFPA secretariat:
This kit contains a PowerPoint presentation and a learning guide in Word format for use in any non-commercial setting. These files are provided by the Women for Positive Action initiative. By requesting these materials, you are agreeing to use them as provided. However, if you choose to significantly adapt or edit these slides, change the meaning or context of the information, or use them for a purpose other than that outlined above, you accept responsibility for the content of your presentation and agree to use a different slide template.
Accuracy of Information and Disclaimer
We do our best to ensure that all information and material on the slides is accurate as at 8 July 2009, and if you find anything that is inaccurate let us know and we will correct it as soon as practicable.
We provide use of these resources free of charge and do so on the basis that we have no liability for their use.
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2. Contents Introducere Importanţa relaţiei medic-pacient
Consideraţii speciale pentru femeile HIV pozitive
Extinderea beneficiilor relaţiei medic-pacient
Studii de caz
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3. Introducere
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4. Parteneriatul de succes dintre pacient şi medic
În general, femeile relaţionează bine cu medicii lor, neavând preferinţe pentru medici femei sau bărbaţi.1
Cei mai mulţi medici se consideră empatici vizavi de pacienţii lor.
Aşadar susţinerea unei relaţii de success între pacient şi medic este importantă.
Overall, women tend to be satisfied with their HCP, particularly if the HCP is empathetic and knowledgeable about HIV1. In general, this is not linked to the patient’s socio-economic status, HIV risk, alcohol/drug use, health status or quality of life and does not rely on gender or racial matching between patient and HCP1
Reference
1. Sullivan LM et al. The doctor–patient relationship and HIV-infected patients’ satisfaction with primary care physicians. J Gen Intern Med 2000; 15: 462–469
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5. Importanţa relaţiei medic-pacient
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6. Care este scopul susţinerii relaţiei medic-pacient?
Ajută femeile să înţeleagă şi să treacă peste provocările infecţiei HIV
Împuterniceşte femeile
să devină parteneri activi în
programul propriu de menţinere a
sănătăţii \
Suport
Relaţie pozitivă
medic-pacient
Trust and effective, two-way communication are the building blocks of a positive therapeutic relationship between women and healthcare professionals (HCPs), which in turn is fundamental to support women on their HIV journey and achieve better outcomes
In addition to helping women overcome the challenges that HIV may bring, HCPs play a key role in empowering women to ask questions and enabling them to make informed decisions regarding their care
Încredere
Comunicare
deschisă,
reciprocă
Respect
Compasiune
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7. Aşadar femeile sunt încurajate să:1–4
Încurajarea femeilor pentru a deveni parteneri activi în propriul program de menţinere a sănătăţii
Modelul optim de îngrijire medicală a evoluat către o abordare gen parteneriat sau alianţă medic-pacient.
Aşadar femeile sunt încurajate să:1–4
Pună întrebări şi să ceară informaţii medicului
Aducă în dicuţie probleme psihologice şi medicale
The approach to medical care has evolved over recent decades to one of partnership between the patient and HCP. Patients are now encouraged to communicate their values, priorities and expectations and to participate in shared decision making1–4. HCPs should help women to take on this responsibility and thus develop a greater sense of control over their care. Consultations are a key opportunity for patients to express themselves
References
1. Butow P et al. Cancer consultation preparation package: changing patients but not physicians is not enough. J Clin Oncol 2004; 22(21): 4401–4409
2. Kidd J et al. Promoting patient participation in consultations: a randomised controlled trial to evaluate the effectiveness of three patient-focused interventions. Patient Educ Couns 2004; 52: 107–112
3. Haywood K et al. Patient participation in the consultation process: a structured review of intervention strategies. Patient Educ Couns 2006; 63: 12–23
4. Levinson W, Roter D. Physicians’ psychosocial beliefs correlate with their patient communication skills. J Gen Intern Med 1995; 10: 375–379
Se implice în luarea deciziilor
Îşi asume responsabilitatea pentru bunăstarea proprie.
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8. Beneficiile unei relaţii eficiente medic-pacient
O alianţă centrată pe colaborarea dintre pacient şi medic este asociată cu îmbunătăţirea stării pacientului:
Implicare activă în decizii legate de sănătatea proprie
Aderenţa la tratament Îngrijire proprie a pacientului
Încrederea în utilitatea tratamentului
Rezultate în sănătate Eficienţă proprie
Satisfacţie
A patient-centred strategy is more productive than a HCP-dominant style, and can elicit information required for tailored management strategies1
Such a personal, caring approach improves satisfaction, self-efficacy, proactivity in the patient–HCP relationship, involvement in decision making and belief in treatment utility1–3
Furthermore, medical advantages including better treatment adherence and health outcomes have also been demonstrated2–5
Partnership also encourages patients to remain in care, whereas a paternalistic relationship can serve as a barrier to effective care6
References
Levinson W, Roter D. Physicians’ psychosocial beliefs correlate with their patient communication skills. J Gen Intern Med 1995; 10:
2. Fuertes JN et al. The physician–patient working alliance. Patient Educ Couns 2007; 66(1): 29–36
3. Gerbert B et al. “Making all the difference in the world”: how physicians can help HIV-seropositive patients become more involved in their healthcare. AIDS Patient Care STDS 1999; 13(1): 29–39
4. Schneider J et al. Better physician–patient relationships are associated with higher reported adherence to antiretroviral therapy in patients with HIV infection. J Gen Intern Med 2004; 19(11): 1096–1103
5. Sherr L et al. Adherence to antiretroviral treatment in patients with HIV in the UK: a study of complexity. Better physician–patient relationships are associated with higher reported adherence to antiretroviral therapy in patients with HIV infection. AIDS Care 2008; 20(4): 442–448
6. Defining the Patient-Physician Relationship for the 21st Century. 3rd Annual Disease Management Outcomes Summit. October 30 – November 2, 2003; Phoenix, Arizona: vi
7. Mallinson RK et al. The provider role in client engagement in HIV care. AIDS Patient Care STDS 2007; 21 (Suppl 1):S77–S84
. . . Şi ajută pacientul să rămână în grija medicului7
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9. Beach MC et al. J Gen Intern Med 2006
Beneficiile unei relaţii medic-pacient, bazată pe îngrijire personalizată
Pacienţii “trataţi ca o persoană’’ de către medicul lor au fost mai deschişi faţă de TARV, cu o rată de aderenţă ridicată şi încărcătură virală nedectabilă. Au mai raportat şi o calitate a vieţii mai bună, număr relativ mic de consultaţii pierdute, încredere în terapie, mai puţin stres social, consum diminuat de droguri sau alcol.
(n=1743)
Procent pacienţi
Patient-centered care, defined as understanding each patient as a unique person, is widely considered the standard for high-quality interpersonal care
Patients’ perception of being ‘‘known as a person’’ and receipt of highly active antiretroviral therapy (HAART), adherence to HAART, and health outcomes among patients with HIV were examined in 1743 patients with HIV, of whom 38.8% (1823) were women
Patients who reported that their HCP knows them ‘‘as a person’’ were statistically significantly more likely to receive ART (60% vs 47%), adhere to their ART (76% vs 67%) and have undetectable viral load (49% vs 39%)
Patients who reported their provider knows them ‘‘as a person’’ also reported higher quality-of-life, missed fewer appointments, reported more positive beliefs about therapy, less social stress and were less likely to use illicit drugs or alcohol
These results support the hypothesis that improving the quality of patient-HCP relationship is directly related to health benefits for patients
Reference
Beach MC et al. Is the quality of the patient-provider relationship associated with better adherence and health outcomes for patients with HIV? J Gen Intern Med 2006; 21:
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Beach MC et al. J Gen Intern Med 2006

10. Posibile bariere în relaţia medic-pacient
Alte chestiuni1
Chestiuni personale 1
Dificultatea de a înţelege informaţiile despre HIV şi tratament
Teama de intra în tratament
Non-aderenţa la tratament
Sentimente negative despre sine sau despre tratament
Lipsa curajului de a pune întrebări, teama de a-i contrazice pe ceilalţi
Dificultatea de a dezvolta relaţii sau rapoarte interumane din cauza diferenţelor culturale, de personalitate, de vârstă, etc.
Lipsa unei îngrijiri continue
Diferenţe de ordin instituţional, cultural sau lingvistic
Tehnologii medicale noi
Reglementări guvernamentale, rambursări şi chestiuni legate de preţ2
Eligibilitatea pentru tratament
Chestiuni legale
Schimbarea normelor sociale2
As a positive partnership between HCP and patient is fundamental to the optimal care of HIV patients, it is important to identify and overcome issues that can hinder effective communication and trust between both parties1. In some cases it may be necessary to change HCP, and women should be made aware that this is an option for them
Changes within and outside the healthcare sector are constantly moulding patient and physician behaviour2
References
Sullivan LM et al. The doctor–patient relationship and HIV-infected patients’ satisfaction with primary care physicians. J Gen Intern Med 2000; 15: 462–469
Defining the Patient-Physician Relationship for the 21st Century. 3rd Annual Disease Management Outcomes Summit. October 30 – November 2, 2003; Phoenix, Arizona: iv.
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11. 7 elemente esenţiale în relaţia medic-pacient
Communicare 7
Experienţe ambulatorii
Rezultate
Luarea deciziilor
Experienţe din timpul internărilor în spital
Communication: including means of communicating; information gathering; the role of patient self-assessments and feedback; delivery of information; and adequacy of information
Out patient clinic/office experience: including access to care; office-patient communication; processes for obtaining prescriptions and refills; information forms; and the care environment
In-hospital experience: including expectations for personalizing care; the physician in charge; communication among members of the health care team, patients, family and patient advocates; discharge planning and the emergency room experience
Education: including information provided by physicians to patients; addressing patients’ individual situations; non-physician sources of information; and the role of self-care
Integration/continuity: including the sharing of information among all members of the health care team; navigation of the health care system; medical records; and health plan information
Decision-making: including the patient’s role; the patient advocate’s role; the right of patients to know all evidence-based options; and non-clinical factors that impact medical decisions
Outcomes: including clinical outcomes; patient-centered outcomes; and physician-centred outcomes
Reference
Defining the Patient-Physician Relationship for the 21st Century. 3rd Annual Disease Management Outcomes Summit. October 30 – November 2, 2003; Phoenix, Arizona: vi.
Integrare/
continuitate
Educarea
pacientului
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Disease Management Outcomes Summit 2003

12. Atingerea excelenţei în comuniare şi educare
Comunicare
Educaţie
Pacienţii îşi cunosc simptomele
Discuţii active, reacţie şi implicarea din partea pacienţilor
Infomaţii non-medicale despre pacient
Efectele asupra vârstei, etniei, religiei asupra îngrijirii
O abordare flexibilă a comunicării
Programe de îngrijire proprie
Nivele diferite de cunoştinţe ale pacientului şi medicului
Educaţie adaptată la fiecare pacient în parte
Responsabilitatea pacientului pentru îngrijirea proprie a sănătăţii
Communication
Patients are most knowledgeable about their symptoms and all parties should acknowledge this
Encourage patient discussion & feedback
A social questionnaire allows a patient to communicate essential, non medical information about their lives
Understanding of the role a patients’ gender, age, race and religion plays in their treatment and ongoing care
The patient-physician relationship could benefit from extended communication rather than being restricted to one-to-one visits
Education
Patients, physicians and peer support networks work together to create an ongoing self-care programme
Education addresses physician-patient knowledge differences
Patient tailored education - including peer support network led initiatives
Patient takes responsibility for managing their condition
References
Defining the Patient-Physician Relationship for the 21st Century. 3rd Annual Disease Management Outcomes Summit. October 30 – November 2, 2003; Phoenix, Arizona
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13. Atingerea excelenţei: experienţă clinică/ambulatorie
Ambulatoriu
Clinică
Acces oportun şi flexibil la consultaţii
Pregătirea pacienţilor şi a medicilor pentru vizitele periodice
Notiţe luate în timpul fiecărei vizite şi informaţii despre politici.
Personal profesionist şi politicos
Acces flexibil- întâlniri în afara orelor de program
Îngrijire personalizată
Rolul medicului- bine definit
Comunicare eficientă
Stabilirea aşteptărilor pacientului
Comunicare cu familia şi cu persoanele care oferă îngrijiri persoanei serpozitive HIV
Gestionarea planificării
Asigurarea ca departamentul/camera de urgenţă este folosit pentru urgenţe reale
Clinic/office
Patient access to timely and flexible appointments with both parties making every effort to be on time for appointments
Patients and physicians should arrive prepared for the consultation with the physician having reviewed the patients information in advance
Availability of surgery information in writing
Polite and professional staff well trained to facilitate the care experience
Flexible access to surgery – out-of-hours appointments
Hospital
Personalised care
Clearly defined physician roles identifying to the patient which physician is in charge
Effective communication to avoid errors
Set patient expectations prior to procedures
Communicate with family/carers as approved by the patient
Physicians should ensure discharge planning
A strong patient-physician relationship should ensure that the accident and emergency department is used for true emergencies
References
Defining the Patient-Physician Relationship for the 21st Century. 3rd Annual Disease Management Outcomes Summit. October 30 – November 2, 2003; Phoenix, Arizona
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14. Atingerea excelenţei: integrare, luarea deciziilor şi rezultate
Progresul pacientului facilitat de sistemul sanitar
Rezultatele clinice împărtăşite cu membrii echpei sanitare
Informarea pacienţilor despre rezultatele testelor
Integrare
Luarea
deciziilor
Considerarea factorilor religioşi, economici, şi psihosociali
Implicarea pacientului în luarea deciziilor
Cunoaşterea de către pacient a opţiunilor terapeutice
Discutarea aderenţei la tratament
Discuţie în prealabil a rezultatelor practicilor medicale
Înţelegerea rezultatelor centrate pe pacient ca obiective valide ale îngrijirii.
Rezultate
Integration
Physicians should facilitate patient progress through the healthcare system
Physicians should, with patient consent, make every effort to share clinical results with appropriate members of the health care team
Physicians should provide patients with all test results
Decision Making
Physicians should consider personal, religious, economic and psychosocial factors when considering treatment options
Patients are obliged to ask questions and participate in the decision. In a qualitative study of HIV patient perspectives, three scenarios were identified which acted as windows of opportunity for patients to become more involved in their healthcare: diagnosis, first development of symptoms and beginning treatment2
Patients should be made aware of all therapeutic options
Patients are able to discuss non-adherence to treatment
Outcomes
Patient and physician discuss clinical practice outcomes
Physicians understand patient-centred outcomes as valid objectives
References
Defining the Patient-Physician Relationship for the 21st Century. 3rd Annual Disease Management Outcomes Summit. October 30 – November 2, 2003; Phoenix, Arizona
Gerbert B et al. “Making all the difference in the world”: how physicians can help HIV-seropositive patients become more involved in their healthcare. AIDS Patient Care STDS 1999; 13(1): 29–39
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15. Consideraţii speciale pentru femeile infectate cu HIV
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16. Diferenţele sociale şi culturale afectează modul în care femeile îşi înţeleg şi îngrijesc infecţia HIV
Control limitat al comportamentului sexual cu risc minim.
Posibiltăţi limitate de negociere a frecvenţei şi naturii relaţiilor sexuale
Violenţa poate creşte vulnerabilitatea femeii în faţa infecţiei HIV
Gestionarea simultană a tratamentului, serviciului, familiei şi altor probleme ginecologice şi medicale poate fi o provocare.
Femeile emigrante, în particular, sunt adesea izolate şi fără susţinere socială.
Barierele lingvistice şi culturale pot spori lipsa de susţinere.
A number of psychosocial factors increase the risk of HIV infection in women:
Limited control over the means to practice low-risk sexual behaviour, such as condom use
Social standing and inability to negotiate frequency of and nature of sexual interactions
Violence may increase a woman’s vulnerability to HIV because:
Forced sex may result in tears and lacerations that contribute to virus transmission
Violence can prevent women from safe-sex negotiations and access to treatment
Fear of violence may prevent women from getting tested for HIV and/or disclosing their HIV status to others
References
WHO. Gender inequalities in HIV. Available at: Accessed January 2008
Stratton SE and Watstein SB. The encyclopedia of HIV and AIDS. 2nd ed. New York: Facts on File. 2003
Pan American Health Organization. Gender and HIV. Women, Health and Development Program Fact Sheets Available at: Accessed January 2008
Acces redus la îngrijire medicală, educaţie şi resurse.
Impactul credinţelor religioase şi culturale asupra femeilor
Pot proveni din comunităţile greu accesibile 16
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17. Medicul poate subaprecia nevoia pacienţilor de informaţie.
Îmbunătăţirea metodei de diseminare a informaţiilor către femeile HIV pozitive
Medicul poate subaprecia nevoia pacienţilor de informaţie.
Medicul poate supraevalua accesul şi valoarea informaţiilor date.1
Aşadar informaţiile trebuie adaptate la problemele femeilor şi la particularităţile culturale ale fiecăreia.
Women’s information needs are often underestimated by HCPs1. Appointments are typically limited in duration and the emotional impact of certain facts can make them difficult to absorb
Educational resources tailored to women’s issues can enhance the information provided verbally by HCPs, enabling the consultation time to be used effectively and giving women the confidence to be more assertive during the discussion
Knowledge is powerful. By understanding HIV, women are able to make informed decisions about their healthcare and understand how they can optimize their health and reduce the risk of onward transmission. Importantly, although educational resources may improve information exchange, decision making must still be shared between patient and HCP1
Reference
1. Kinnersley P et al. Interventions before consultations to help patients address their information needs by encouraging question asking: systematic review. BMJ 2008; 337: a485
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18. Corelarea chestiunilor psihosociale cu cele medicale
Pacienţii acestor medici s-au dovedit mai deschişi în a vorbi despre sentimentele lor, în a exprima emoţii pozitive şi în a-şi asuma un rol de partener, demonstrând nivele mai scăzute ale anxietăţii şi furiei.
Pacient
Medicii care iau în considerare coordonatele psihosociale ale pacienţilor au dovedit mai multă siguranţă, empatie, şi grijă. De asemenea aceştia au formulat mai multe întrebări deschise, faţă de alţi colegi care s-au concentrat numai pe istoria medicală a unui pacient.
Întrebări şi solicitarea de informaţii
Discutarea problemelor psihosociale şi medicale
Participare la luarea deciziilor
In a study of underlying physician attitudes, physicians who considered psychosocial aspects of a person’s life important were more likely to make statements of reassurance, empathy or concern, and use more open-ended questions than those who focussed only on medical aspects
In turn, patients of these physicians were more likely to discuss their feelings, express positive emotions and take a partnership role, and less likely to show anger or anxiety
There was no difference in length of visit between physicians addressing or those ignoring the psychological topics
Reference
1. Levinson W, Roter D. Physicians’ psychosocial beliefs correlate with their patient communication skills. J Gen Intern Med 1995; 10: 375–379
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Levinson & Roter. J Gen Intern Med 1995

19. Îngrijire personalizată
Clasă
socio-economică
Vârstă
Chestiuni de familie
Chestiuni de ordin
sexual
Istoric medical
Sarcină
Îngrijirea pacientei trebuie
să varieze în funcţie de nevoile unice
şi circumstanţele personale
ale fiecărei femei...
Suport
Stadiul
clinico-imunologic
HIV
Emigrare
Potenţial
fertil
Violenţă sau abuz sexua
Probleme de co-morbiditate (e.g. alcolism, consum de droguri, depresie)
The method and approach to HIV counselling and care will vary from woman to woman according to their unique needs and personal circumstances1
Religious and spiritual beliefs can influence a woman’s experience of HIV dramatically and may present specific challenges for treatment. For example, fasting periods may impact a woman’s ability to take her medication correctly. In addition, language and cultural barriers among migrant women can make communication and management difficult, leaving this group vulnerable2
References
Myers T et al. HIV testing and counselling: test providers’ experiences of best practices. AIDS Educ Prevention 2003; 15(4): 309–319
Kreps GL, Sparks L. Meeting the health literacy needs of immigrant populations. Patient Educ Couns 2008; 71(3): 328–332
Acceptarea diagnosticului
Cultură sau religie
Limbă şi nivel de
înţelegere
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20. Îngrijire personalizată
. . . Tineţi cont de rolul social
al femeii de: mamă, partneră, fiică, susţinător al familiei
Prescribing for women must take into consideration the social roles of women. For example, acknowledging:
Their future plans for, or likelihood of, becoming pregnant
The impact of treatment side effects on their ability to look after family members, including HIV-positive children
The convenience of regimens in relation to their daily activities
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21. Corelarea îngrijirii cu nevoile pacientei:
Potenţial mai bun
pentru comunicarea cu medicul
(mediu cultural comun)
Mai puţine
bariere lingvistice
Stigmatizare culturală HIV
Barieră lingvistică
Dezechilibru în cazul
neconfirmării
statusului de emigrant
Emigrant
Non-
emigrant VS
Aderenţa: de obicei-
chestiune dificilă
Susţinere continuă/
păstrarea unei stări pozitive
Perioadă pre-
acceptare a
diagnostocului
Perioadă
post-acceptare
a diagnsotcului
Aderenţă îmbunătăţită/tratament
Educaţie şi încurajare
Găsirea unor soluţii în
cazul unui ritm de viaţă
dezechilibrat VS
Dificultate în
înţelegere determinată de
educaţia precare
Pătură
socio-economică
Inferioară
Pătură
socio-economică
superioară
De obicei-
mai educaţi
Uşurinţă
în a accepta o situaţie VS
Aderenţa este de obicei ridicată
Alegerea ARV-urilor
care şi-au demonstrat siguranţa
şi eficienţa în limitarea riscurilor
în timpul sarcinii
WOCB = woman of child-bearing age; PI = protease inhibitor
Sarcină
Fără sarcină
Tratament
conform protocolului
Considerată cu potenţial
fertil VS
Concentrare pe contracepţie
Administrarea
de IP dacă încrederea
în contracepţie este scăzută
Possibilă sarcină
Contracepţie sigură
sau PFPF
Mai puţine griji în privinţa unei
sarcini VS
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Abbott

22. Cum percep femeile infecţia HIV: parcursul pacientei+
Aceptare/depăşire
Dezvăluirea
diagnosticului
(des evitată)
Iniţierea
tratmentului
Sarcină, pierderea locului de muncă, momente negative din viaţă
(la orice stadiu)
Îmbunătăţirea stării
emoţionale
Efecte adverse
Dacă este respinsă de cei apropiaţi
Dacă este respinsă de partener
Once diagnosed, women with HIV progress through an emotional journey, fraught with ‘ups’ and ‘downs’, and many experience depression that can continue over the long term. Although the precise path is unique to each individual, HCPs should be aware of the optimal scenario and recognise junctures at which women may require additional support. The next few slides discuss the challenges of diagnosis, pregnancy, disclosure and initiation of treatment
Stigma surrounding HIV is pronounced. This may be directly experienced or may be perceived due to the woman’s fear of that discrimination and negative attitudes would become evident if she disclosed her disease status
The time taken to accept and reconcile disease status can be prolonged and may be linked with long-term depression
Women diagnosed with HIV may experience huge feelings of guilt and fear of rejection by loved ones
If the patient becomes more closed and withdrawn as she comes to terms with the disease she may be less likely to disclose her status. This may result in poor motivation to start/adhere to treatment
Patients can be assisted to cope with their disease through support groups, strong relationships, sharing the burden of disease, emotional expression, counselling and psychological interventions/treatment
During the course of their journey patients often have to deal with several issues including:
Impact of HIV on their education, career, employment, child-bearing options, ageing, body shape and image, relationships
Abandonment by husband/partner
Coping with feelings of betrayal towards an ex-partner/husband who had knowingly infected them
Criminalisation issues and associated trauma (e.g. court cases, child removal, access to justice, privacy)
References
Abbott. The Planning Shop International Women Research, July Data on file. Date of preparation: September 2008, AXKAL
Mahajan AP et al. Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward. AIDS 2008, 22 (suppl 2): 6-9
Ickovics JR et al. Mortality, CD4 cell count decline, and depressive symptoms among HIV-seropositive women. JAMA 2001; 285:
Negare
Depresie (poate continua)
Diagnostic -
parcurs optim
Dezechilibre emoţionale şi depresie
Parcursrul pacientelor este caracterizat de o succesiune de stări, unice de la o femeie la alta. Acesta aderă la modelul clasic de suferinţă.
The Planning Shop International Women Research, iulie 2008 22 22

23. Provocarea . . . diagnosticului
Furie
Durere
Negare
Întristare
Teamă
Acceptare
Coming to terms with an HIV diagnosis often involves coping with a range of emotions, including grief, denial and anger. Diagnosis is a life-changing event. The road to acceptance can be long, and patients require much support to reach this goal. Acceptance is key to treatment success as denial can reduce adherence with medications
Information and resources designed specifically for newly diagnosed women may help reduce their psychological burden and reduce the risk of long-term depression and other negative outcomes
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24. Provocările. . . sarcinii
Posibilitatea unei sarcini reprezintă un subiect important pentru toate femeile seropozitive HIV cu potenţial fertil.
Statusul HIV trebuie
discutat şi considerat
ca parte integrantă
a îngrijirii antenatale. ŞI
Sarcina trebuie
considerată parte integrantă
a metodei de îngrijire HIV.
The possibility of pregnancy is an important consideration for HIV-positive women, irrespective of whether they are planning a family. Pregnancy at any stage of a woman’s HIV journey brings a number of specific concerns that will need to be discussed
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25. Întrebări generate de o sarcină:
Ce se întâmplă dacă şi copilul meu este HIV pozitiv? Când voi şti acest lucru?
Cum pot rămâne însărcinată fără a-mi infecta partenerul?
Mă va tratata personalul medical diferit?
Statusul meu HIV ar putea determina anomalii copilului meu?
Care este riscul de a-mi infecta partenerul?
Care este riscul ca şi copilul meu să fie infectat? ?
Voi trăi într-atât încât să îmi văd copilul crescut?
There are many common issues and concerns that the patient may consider when planning for a pregnancy
Tratamentul ne poate afecta pe mine şi pe copilul meu?
Ce este recomandabil: alătarea sau hrana artificială?
Sarcina îmi poate înrăutăţi starea de sănătate (HIV)?
Trebuie să optez pentru naşterea prin cezariană? 25 25 25

26. Provocările. . . dezvăluirii diagnosticului
Bariere . . .
Vină, supărarea familei
Respingere, acuzaţie de infidelitate
Abandon
Piederea susţinerii financiare
Violenţa (până la 60%)1
Stigmatizarea
Discriminare
Motivări . . .
Simţul responsabilităţii etice
Preocupare pentru sănătatea pacientului
Simptome şi gravitatea bolii
Nevoia suportului social
Telling others about a positive HIV status or recent diagnosis is difficult for all patients
Women may be particularly vulnerable to the negative consequences of disclosure. For example, women are more likely to be dependent financially on a partner meaning abandonment would bring economic as well as emotional stress
As many as 60% of women live with the threat of violence, for whom disclosure may be especially difficult1
Women in developing countries are less likely to disclose their status to sexual partners (10–78% keep the information secret) compared with women from developed countries (3–10%)2
References
WHO. Gender inequalities and HIV. Accessed November
WHO. HIV status disclosure to sexual partners: rates, barriers and outcome for women. Accessed November _%5B92%20KB%5D.pdf
Nevoia eliberării stresului
nemărturisirii diagnosticului
Facilitarea tratamentului,
contact sexual protejat,
comportament de prevenire HIV
WHO. Gender inequalities and HIV 2008; WHO. HIV status disclosure to sexual partners: rates, barriers and outcome for women
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27. Facilitarea dezvăluirii diagnosticului
Discutarea în timpul consilierii pre şi post testare a nevoii de a-i informa pe ceilalţi despre statusul HIV.
Adresarea problemei de dezvăluire obligatorie a diagnosticului şi rolul medicului în această situaţie.
Sublinierea aspectelor pozitive ale divulgării diagosticului.
Encouraging patients to disclose their status to sexual partners is an important aspect of HIV prevention strategies. Once a person is aware of their HIV status, they are more inclined to reduce their risk-taking behaviour and seek appropriate treatment
Counselling before and after the HIV test is an opportunity to discuss disclosure, including who and how to tell and the potential legal, ethical and medical implications of not telling. A HCP may be legally obliged to inform an HIV-negative partner if the patient refuses to do so. This may ruin the patient–HCP relationship if not handled sensitively within a supportive framework
Peer Support is essential in gaining real skills to deal with disclosure:
Sharing experiences
Sharing strategies
Creating support networks to deal with possible rejection
Reassuringly, disclosure to sexual partners is often associated with a positive outcome, and individuals receive support and kindness from their partners and suffer less depression and anxiety1
Reference
WHO. HIV status disclosure to sexual partners: rates, barriers and outcome for women. Accessed November
Iniţiativa Women for Positive Action este susţinută de un grant Abbott

28. Provocarea....iniţierii tratamentului
Aderenţa la tratament este critică pentru:
Nivelul celulelor CD4 şi încărcătura virală
Dozele neadministrate pot permite replicarea mai rapidă a virusului şi distrugerea sistemului imunitar. 1
Prevenirea rezistenţei la ARV
Dozele neadministrate pot determina dezvoltarea tulpinilor HIV rezistente.
Taking HIV medications correctly increases the likelihood of their success. Missing doses or taking medication ‘holidays’ can have disastrous effects on the immune system, viral load and resistance 2
Iniţiativa Women for Positive Action este susţinută de un grant Abbott

29. Provocările iniţierii tratamentului
Bariere de depăşit înaintea
iniţierii tratamentului 1,2
Teama de efecte adverse
Chestiuni legate
de stilul de viaţă
Refuzul de a accepta diagnosticul
Apreciere de sine scăzuă
It is important to target potential barriers to starting and maintaining a treatment regimen before initiating therapy1,2
Readiness instruments and practice placebo trials may be useful in assessing whether a woman is ready to commence and adhere to treatment1
References
Nordqvist E et al. Assessing and achieving readiness to initiate HIV medication. Patient Educ Couns 2006; 62(1): 21–30
2. Dahab M et al. “That is why I stopped the ART”: patients’ and providers’ perspectives on barriers to and enablers of HIV treatment adherence in a South African workplace programme. BMC Public Health 2008; 18(8): 63
Lipsa încrederii în medic
Probleme de
comunicare
Preferinţă pentru tratamente alternative
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30. Valorificarea beneficiilor relaţiei medic-pacient
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31. Facilitarea aderenţei la tratament
Număr prea mare de pastile
Nu am timp de vizite la medic
Mă simt bine – nu trebuie să îmi reînnoiesc reţeta
Nu vreau să îmi iau pastilele
Nu cunosc momentul propice pentru administrarea fiecărui medicament
Am uitat să iau pastilele în timpul vacanţei
Once started, women will need to follow their treatment regimen over the long term
Full adherence can be difficult as many regimens involve several doses each day, some treatments have food restrictions, and some interact with other medications
Since women often have care giving roles, they may not feel that they have the time to focus on themselves, or may find it difficult to fit complex regimens and clinic visits into their lifestyle
Psychosocial issues may be overwhelming, including poverty, threat of deportation, violence, depression and substance use1. For some people, lack of understanding is the issue, either through insufficient counselling or due to communication and language barriers. Others may not believe in the utility of their medical treatment or suffer from low self-worth
Alternatively, side effects can discourage patients from continuing a particular treatment. The fear of lipodystrophy and resultant negative effects on body image can be disturbing for women2
References
1. Dahab M et al. “That is why I stopped the ART”: patients’ and providers’ perspectives on barriers to and enablers of HIV treatment adherence in a South African workplace programme. BMC Public Health 2008; 18(8): 63
2. Guaraldi G et al. Severity of lipodystrophy is associated with decreased health-related quality of life. AIDS Patient Care STDS 2008; 22(7): 577–585
Mi-e teamă de felul în care tratamentul îmi va modifica aspectul corpului
Medicamentele mi-au făcut rău, aşa că am incetat să le mai iau
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32. Factori de succes ai aderenţei la tratament
Procesul de aderenţă la tratament este complex, bazându-se pe anumiţi factori:1
Vârstă matură
Non-emigrant
Discutarea problemelor psihologice şi medicale
Adherence to treatment is a complex issue, and HCPs should be aware of the factors that can reinforce this behaviour
A large study of adherence in HIV patients in the UK found that only 42% of patients were fully adherent, taking all their medications at the correct time and under the appropriate dietary conditions1
The survey of adherence in 502 individuals with HIV attending HIV clinics in the UK found 79% had been dose adherent with their antiretroviral medications in the previous 7 days; however in 43% of patients at least one dose had been taken at an incorrect time and in 27% the dose was taken under the wrong circumstances, therefore, only 42% were fully adherent
Schneider et al undertook a similar study in the USA2. This large survey of adherence to antiretroviral treatment examined the determinants of this behaviour. A survey to define the impact of the patient–HCP relationship on treatment adherence in 552 individuals with HIV and 22 HCPs found that all seven quality indicators of the patient–HCP relationship were associated with adherence (general communication, provision of HIV-specific information, participatory decision-making style, overall satisfaction with care, willingness to recommend the HCP to others, trust in the HCP and communication about adherence to antiretroviral treatments). Poor physical and mental health reduced the probability of adherence and women reported lower adherence than men
Reference
1. Sherr L et al. Adherence to antiretroviral treatment in patients with HIV in the UK: a study of complexity. Better physician–patient relationships are associated with higher reported adherence to antiretroviral therapy in patients with HIV infection. AIDS Care 2008; 20(4): 442–448
2. Schneider J et al. Better physician–patient relationships are associated with higher reported adherence to antiretroviral therapy in patients with HIV infection. J Gen Intern Med 2004; 19(11): 1096–1103
Implicarea pacienţilor în luarea deciziilor legate de
tratament.
Asumarea repsonsabilităţii de către pacient pentru
menţinerea echilibrului.
Discuţii interactive cu medicul (inclusiv întrebări).
Sherr L et al. AIDS Care 2008; Schneider J et al. J Gen Intern Med 2004
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33. Facilitarea aderenţei la tratament
Măsuri care optimizează aderenţa:
Asigurarea diseminării cunoştinţelor necesare legate de
tratament
Reiterarea importanţei tratamentului
Implicarea pacientului în luarea deciziilor
Selectarea unui regim la care pacientul să adere cu uşurinţă
Asigurarea suportului social şi psihologic
From the outset, a treatment regimen should be matched to the lifestyle and needs of the individual, and the choice made jointly by the patient and the health care team1,2. This decision, plus all follow-up discussions, should be mindful of the patient’s belief systems about treatment with the emphasis on ‘concordance’ rather than ‘compliance’1
Patients typically need extra support at the start of treatment, while they become familiar with the regimen and its side effects. However, long-term success depends on the continued cooperative effort between patient and HCP. Patients who believe in the utility of treatment are more likely to follow regimens1
Since mental health and depression have a negative effect on adherence, early identification and treatment are critical2
References
Dahab M et al. “That is why I stopped the ART”: patients’ and providers’ perspectives on barriers to and enablers of HIV treatment adherence in a South African workplace programme. BMC Public Health 2008; 18(8): 63
Schneider J et al. Better physician–patient relationships are associated with higher reported adherence to antiretroviral therapy in patients with HIV infection. J Gen Intern Med 2004; 19(11): 1096–1103
Monitorizarea şi tratarea unor eventuale dezechilibre mentale
Asigurarea unui sprijin suplimentar în timpul primelor luni de
tratament
Monitorizare regulată şi pe termen lung/consolidarea aderenţei
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34. Promovarea nevoii de schimbare a comportamentului
Relaţie de
conducere
Relaţie de
coordonare
Medic:
Informează şi oferă o singură soluţie
Rezultat:
Rezistenţa pacientului
Medicul îşi poate vedea pacientul nemotivat sau în stare de negare
Medic:
Informează şi îşi intreabă pacientul cum crede el că se poate schimba
Ascultare reflexivă pentru exploarea soluţiilor
Rezultat:
Implică pacienţii în identificarea şi asumarea responsabilităţii de schimbare a comportamentului.
Changing a patient’s behaviour can influence their chance of survival. Patients are more likely to alter their ways if they are helped to make decisions for themselves rather than being told what to do1. Consultations aimed at effecting change are often difficult, particularly when the patient has a strong belief that may hinder optimal care. Examples include women who:
believe that God will protect them or their family from infection, so precautions or medication are not required
partake in risk-taking activities or put another person at risk of infection in order to avoid disclosure
continue risky sexual behaviour out of fear of violence from their partner
Reference
1. Rollnick S et al. Consultations about changing behaviour. BMJ 2005; 331: 961–963.
Iniţiativa Women for Positive Action este susţinută de un grant Abbott
Rollnick S et al. BMJ 2005

35. Înţelegerea aspectelor şi modelelor de relaţie medic-pacient
Instrumental
Expresiv
Aspectele tehnice ale îngrijirii: teste, analize şi stabilirea unei scheme de tratament.
Empatie şi căldură în abordarea relaţiei medic-pacient
Medicul recomandă, pacientul cooperează
“Medicul ştie mai bine” este o expresie non-autoritară şi legitmă pentru selectarea tratamentului optim
Se aşteaptă din partea pacientului, cu grad mai mic de putere, să urmeze recomandările medicului
Grade diferite de putere în relaţia medic-pacient
Medicul tratează activ pacientul, pacientul este pasiv
Pacientul are nevoie de informaţii şi de asistenţă tehnică
Medicul ia decizii pe care pacientul trebuie să le accepte
Nu este optimă pentru un succes pe termen lung
Activ-Pasiv
Coordonare- Cooperare
Medicul şi pacientul împart responsabilitatea luării deciziilor şi planficării cursului tratamentului.
Medicul şi pacientul îşi respectă reciproc aşteptările şi valorile
Participare
reciprocă
What is the optimal relationship model for women with HIV and their HCPs? Mutual participation has been proposed as a model of excellence, in which patients are equally responsible for implementing their treatment and determining its efficacy
In reality, the nature of the patient-physician relationship often changes over time. At the time of diagnosis, education and guidance is useful in learning to manage the disease. Once treatment plans are established the patient may move more towards the mutual-participation model as they monitor their symptoms, report difficulties and work with the HCP to modify their treatment plan
Changes in the course of chronic conditions like HIV require a open communication and flexibility so as to determine the success of a treatment plan
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36. Studii de caz
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37. Studiu de caz: Rezultat discordant al testului HIV
Pacientă în vârstă de 33 ani şi partenerul se testează HIV înainte de a renunţa la prezervativ şi de a-şi forma o familie.
Pacienta HIV+ Partenerul HIV-
Pacienta refuză să îşi informeze
partenerul despre rezutatul de
pozitvitate HIV, din cauza fricii de abandon.
În afara acceptării diagnosticului şi a unei potenţiale sarcini, ce alte chestiuni ar mai fi de considerat?
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38. Chestiuni de luat în calcul:
Dezvăluirea diagnosticului şi confidenţialitatea în relaţia pacient-medic:
Multe ghiduri naţionale optează pentru păstrarea confidenţialităţii, cu excepţia cazurilor excepţionale.
Consilierea pre şi post testare ar trebui să abordeze dechis problemele pozitivităţii HIV şi să propună un plan de acţiune pentru primirea veştilor neplăcute.
Dezvăluirea diagnosticului fără acceptul pacientei poate deveni obligatorie, dar poate avea consecinţe negative pentru relaţia medic-pacient şi pentru continuarea acesteia.
Many national guidelines preserve confidentiality to patients unless there are special circumstances – such as an overriding public interest or risk to another individual’s health
Pre- and post-test counselling should openly discuss and anticipate such an outcome and propose how patients should prepare for ‘bad news’
There have been cases of criminalization of HIV positive patients who infected others, as well as doctors being criminally liable for non-disclosure
Disclosing to the HIV negative partner without the woman’s consent may be mandatory but will also have consequences for trust within the patient-doctor relationship that need to be anticipated 38
Iniţiativa Women for Positive Action este susţinută de un grant Abbott 38

39. Studiu de caz: emigrantă de origine africană care trăieşte în Europa
Stabilă pe ARV
Trăieşte într-o locuinţă oferită de stat,
pe care o împarte cu o altă persoană
Se preocupă de aspectul corpului şi de consecinţele dezvăluirii diagnosticului
Plănuieşte să alăpteze
Se bazează pe ideea că “Dumnezeu va avea grijă de copil”
Pe lângă gestionarea tratamentului, ce alte chestiuni ar trebui luate în calcul? 39
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40. Probleme de luat în calcul
Suport social, îngrijire oferită mamei şi
copilului
Separarea copilului de mamă- ultima soluţie.
Adresarea problemei legate de locuinţă autorităţilor competente
Discutarea temerilor legate de aspectul fizic şi dezvăluirea diagnosticului
Poate fi vulnerabilă din punct de vedere psihologic şi poate crede că prin evitarea efectelor adverse ale tratamentului îşi asumă responsabilitatea pentru un nou tip de viaţă.
Luarea în calcul a schimbării tratamentului
Respect pentru convingerile spirituale şi apropierea de suportul comunităţii, ex. lideri spirituali.
Această strategie de susţinere îi poate schimba părerea despre tratament şi alăptarea sugarului.
Breast feeding is an important potential route of mother-to-child transmission. Where safe infant feeding alternatives are available, HIV infected women are usually advised to refrain from breast feeding
In resource poor settings where breast feeding is essential for infant survival, exclusive breast feeding for four to six months may be justified as the next best option after exclusive use of feeding alternatives
The baby could be taken into care by a court of law and treated, then returned to the mother after 4 months. However, separating babies from their mothers should be a last resort as the consequences can be damaging in terms of the psychological impact on the mother and baby and the impact on the relationship between the healthcare providers and the patient
Alternative options include addressing the patient’s housing situation so that she does not have to share a room with others
Seeking community support, especially community faith leaders, can help in such cases. Faith leaders can also help to encourage adherence and issues related to stigma
Many patients with undetectable viral load are asking whether it is possible to breastfeed and guidelines are needed on how to advise on the risks in the light of the Swiss statement
Body image concerns, fear of lipodystrophy, social stigma and disclosure may be important issues to address within a supportive patient-HCP relationship. Change of treatment might be appropriate
Considering these options may help change her opinion about treating and breastfeeding her baby 40
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41. Respectarea credinţelor
De câte ori situaţia permite, se recomandă înţelegerea şi plierea pe credinţele pacientelor şi nu respingerea lor.
Colaborarea cu leader-ii spirituali ai comunităţii poate îmbunătăţi relaţia medic-pacient.
Human beings are often illogical in both their deep-held beliefs and their behaviours
Education is often not enough to modify damaging or risky behavior
Beliefs are therefore a reality and an integral part of care as they are fundamental to the way most people think and act in everyday life
The same holds true for many women living with HIV – particularly those with strong religious and superstitious beliefs, as well as people with a strong faith in alternative and traditional forms of medicine
It is crucial to integrate science, medicine and these beliefs, rather than attempting to fight against a woman’s belief system with ‘science’ or ‘logic’
Stories can often be used to engage religious patients to accept their diagnosis or treatment
Sometimes encouraging religious patients to adhere to HIV medication as well as praying can be effective, e.g. “do you pray for God to protect you when crossing a busy road? But, do you still look left and right as well? Giving your baby medication and not breastfeeding is like looking left and right”
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42. Mulţumesc pentru atenţie!
Întrebări?
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