Team PATA

Challenges identified by the Pharmacists

• Communication & Adherence: Language barriers, complicated terminology, clients pretending to understand instructions as not to disappoint pharmacist, different care givers, medicine sharing amongst siblings.
• Storage conditions: Supply, space to keep medicine, hygiene at home.
• Dosage: Difficult calculations, lack of computer systems, side effects, difficulties with accurate measurements of syrups by caregivers (e.g. the elderly caregivers).
• Formulation: Must manually calculate amounts needed, crushing of tablets, hygiene, regimen complexity (FDC– syrups dose adjustments), different packaging, generic names, difficulty in assessing adherence especially for liquid formulation.
• Caregiver: Low motivation, low understanding, often the caregiver is elderly (even when there are younger people in the family), missed appointments (which lead to poor adherence and treatment failure).
• Multiple nature of treatment: HIV, OI, TB, etc

Challenges identified by the Doctors

• Entry: Failure to link PMTCT to paediatric care and LTFU, mothers testing late.
• Diagnosis: National guidelines lagging at peripheral sites, little access to virological testing, exposure to dried blood spot testing is not universal, delay in test results (when testing for infection) leading to LTFU, lack of equipment, TB diagnosis difficult in mothers.
• Treatment: Psychosocial issues, caregivers change frequently, non-disclosure between parents, lack of competence in community health workers, centralisation of care, CHCW attitudes, poor adherence, changing infant feeding guidelines, cultural issues, caregiver adherence fatigue, lack of supplies (ARV), and poverty in communities.
• Drugs: Legislation lagging, storage facilities, availability of drugs.

Challenges identified by the Nurses

• Orphaned child living with grandmothers: Preparation of balanced meals, giving of drugs, understanding of drugs, not reporting side-effects, no transport to bring the child for follow-up care, lack of family support.
• Taking of quality blood samples: Insufficient specimens, compromised sample.
• Treating children is overwhelming: Manage only due to multiple presentation of illness, depend on caregiver’s history.
• Work overload: Too many patients and not enough staff.
• Late diagnosis of infants: Late HAART/ARV, late turnaround time for PCR results, some mothers do not come to collect the result.
• Inadequate drug supply: Lack of paediatric formulations, measurement of the liquid/syrup formulation.
• High risk of malnutrition: Due to poverty, ignorance etc
• Young/adolescent mothers
• Feeding problems: Side effects of ARVs, lack of dedication, poor circulation of latest guidelines to the health care settings, lack of knowledge of HIV, use of traditional medicines, difficulty to trace the clients, mothers choose formula feeding even though not qualifying according to AFASS criteria

Challenges identified by the Counsellors

• Lack of recognition for counsellors by other professionals: No privacy during counselling sessions, burn- out, transport challenges, HCW attitudes towards client results to loss of infant follow up.
• Labs and testing: Lab errors and false results, caregivers not returning for results, EID DBS results taking long causing stress to mothers, staff have to pay to transport DBS to lab, defaulters increase, no proper system to track patients for results, shortage of kits and drugs.
• Communication: Contradictory information on exclusive feeding, wrong address or contact numbers makes it difficult to track patients.
• Breast/mixed feeding: Mixed feeding due to poverty, lack of knowledge and cultural influence, particularly challenging with mentally challenged mothers who require more support.
• Caregiver discontinuity: Frequent change of caretakers, mother refusing the baby to be tested, family disclosure, lack of economic support due to single motherhood, child-headed households, young mothers lack parental skills.
• Lack of disclosure by the mother: Frequent changes in the ART drug combination, stigma and discrimination, negative attitude by the mother, lack of training.
• Shortage of personnel: Inadequate time for counselling sessions, incompetence of HCW, high staff turnover, trained people absent, lack of orientation of doctors (rotational basis).
• Non-clinic cases: No ANC visits, home delivery, no routine care, comes to the facility very sick, infants not brought in time for testing.
• Lack of male involvement in reproductive education: Failure of parents to appreciate the advantages of child spacing as a part of family planning, teenage motherhood, resistance of male involvement in infant care.
• Non-disclosure: Mother doesn’t disclose HIV+ status to family and caregiver of child, lack of support from family members e.g. alcoholism.
• Poverty: Low socioeconomic status, lack of knowledge about health services provided (due to lack of community outreach)
• Adherence: ART combinations make adherence difficult, drug administration by caregivers, follow-up of defaulters, disclosure of HIV status to partner.

Challenges experienced by doctors

• Adherence: Fear of being found out; Lack of psychosocial support (at the family level); Unaccompanied to clinic visits; Boarding schools; Challenge in monitoring adherence to FDCs; rebellion; peer identity; stigma of missing school; falling behind school work; regimen complexity; side effects (e.g. gynecomastia)
• Stigma (self and ext): Acceptance of diagnosis of HIV infection
• Mental health/development: ADD/ADHD Drug mix; Decreased school performance (and its other causes); Child headed family; substance abuse; suicide; lack of mental health screening tools and time
• Disclosure: Caregiver/parent –to (horiz) by (vertical), Peers, Partners
• Sexuality/reproductive health: Rotating care providers (HCWs) No personal relationships developed; Not open; lack of privacy in access to condoms and family planning; cultural issues/ restrictions; knowledge; staff attitudes lack of preventative education
• Child headed households
• Teenage pregnancy and Young motherhood/marriage
• Role of caregivers, teachers, policy, society
• HCW and Adolescent clashing: Age barrier between HCW and patient
• Resource limitations: Space and staff
• Transitioning to adult care: Guidelines and policy; Working with/adults; Attachment; Treatment transitions; Growth and Development; Model of Care; Stigma and discrimination; Self management and autonomy/involvement; Regimens
• Socioeconomic issues: Financial issues  vulnerable children, child labor; Unplanned pregnancies  Transactional sex, transgenerational sex, low self esteem; Repeated STIs; New infections (HIV)
• HIV Testing: Parental barrier (consent/activity) (reality of sexual); Psychosocial support and post testing; Legal/ethical/moral issues; Legal/ethical/moral issues; Teaching environment (and facilities)
• Complex adherence issues: Multiple drug resistance, failure to identify psychosocial issues and mental health problems, emotional issues; rebellion and risky behavior
• Management of co-morbidities: Polypharmacy and pill burden
• Growth/ development issues: Body image, D4T side effects (lipodystrophy)
• Girl specific issues: Adolescent girls are often the primary caregivers in child-headed households; early marriage and pregnancies; lack of male involvement for married teens

Nurse challenges : Adolescents need special attention and nurturing

• Teenage Pregnancies: Transmission Rate
• Disclosure: HCW/Caregiver, Partner
• Adherence (Poor): Pill Fatigue; Disclosure; Discrimination; Treatment failure; Poor adherence increased with boarding schools, Difficulties with disclosure when they start dating; It takes resilience to encourage them to open up about sexual reproductive issues; It calls for elective measures of psychosocial support (skilled counsellors); Confidentiality and privacy key to their appointments (structure and staffing at times a problem); Orphan girls often tend to choose negative peer pressure ideas (high risk behaviour)
• Depression (Mental health)
• Stigma and Discrimination
• No Youth Friendly Facilities: Structure, admissions, staff attitudes, accessibility (distance, affordable), minimal contact sessions
• Transitioning to adult care
• Loss to Follow Up: Change of clinics (‘window shopping’), Stigma, Health care providers/pt relationship; LTFU due to socioeconomic factors and relocation away from the clinic
• Lack of Managerial Support: Functions, Supportive policies for adolescents, Life-skills
• Sociocultural Issues: Peer group pressure, Religion (faith healing), Sexual issues and Conflicting messages.
• Child-headed families  Girls carry the heaviest burden

Pharmacist challenges

• Service based / dispensing issues: Contraception, PEP, Dosage adjustments, Dispensing / VIP Patients
• Adherence: Stigma, Disclosure, Separate space for adolescents, Side effects
• Education and Training of Pharmacist: Counselling, Team communication, Information for boys and girls, Pharmacists need to be involved with adolescents
• Education: Lack of information – how much to give? Health, sex, adherence, life. What has the counsellor told the patient
• Counselling: Lots, careful, separate room
• Gender based violence: Rape prophylaxis intervention and night
• Contraception
• Absence of parents & other adolescents (alone): Lack of family support: finance, not collecting Rx
• Pharmacists not involved with adolescents problems! Lack of training for pharmacists. Community pharmacy, counselling, communication. Clinical pharmacy
• Don’t have separate pharmacy (or fall between adult & child clinics) for adolescents and children.
• Don’t like to be told what to do : Adherence; Forgetfulness
• Disclosure: Don’t want to take drugs, suicide. Need policies
• Cultural / religious beliefs of caregivers
• School: Boarding vs day- supervision of ART
• Adverse drug reaction: Not ready for ART
• Unwanted pregnancy: Dosage adjustments

Counsellor challenges

• Counsellors are overwhelmed with adolescents who are suicide tendencies
• Contradictory messages among HCW make it difficult for adolescent girl’s access FP services
• It is also a challenge to counsel a teenager as most of the time is not forthcoming or manipulative, whereas some are just attention seekers (most common in age group 16-19 years)
• Cultural and religious beliefs pose a challenge to counselling process (eg. Adherence); Religious factors in faith based facilities
• Disclosure issues (most 16-19 years): Disclosure, not enough quality time to handle the adolescent issues, lack of support to abandoned teenage pregnant adolescents; Late disclosure leads to poor adherence or defaulting medication, known status leads to grief/blaming/suicidal/depression; Disclosure: To Boyfriends, Family, To adolescent girls
• Experiment sexual issues e.g. starting to be involved in risky sexual behaving
• Lack of resources to make an adolescent friendly clinic: No special adolescent clinic
• Many roles to the counsellor as some caregivers abandon their primary roles (you are a counsellor, a parent)
• No service provider to support these adolescents as they are transmitting to adolescents
• Attitude of health care providers about SRH issues in adolescent, adherence, no peer support groups for adolescents
• Stigma (disclosure, discrimination): Adherence, psychological support, social involving, family members; Revealing the status, medical support (specifically for adolescents of all groups), create centre to embrace the adolescents. Psychological support to the adolescent and the family
• Educational support: Career orientation, to become models to other adolescents
• Forming group counselling: To overcome barriers relating to sexuality to avoid early pregnancies
• Sometimes difficult for adolescents to open up during counselling session, decrease in adherence as they grow to older teen example boarding school, tertiary, peer pressure
• Dilemma involving parent/caregiver in reproductive health services: Lack of support after disclosure e.g. family, community, peers. Lack of trainings on how to handle teens. Comfortable with younger children and how to relate.
• Communication as a barrier e.g. a male counsellor talking to a girl, cultural barrier. Disclosure problem, poverty (including prostitution, dealing with children in poverty- nowhere to refer)
• Family planning in adolescents who are sexually active not in position to use condoms, staff attitudes, drug abuse, attention seekers, risky relationships and early pregnancies. Lack of youth friendly
• Sexual abuse/early sexual activity and risky behaviour: Cultural barriers, goal setting/development confusion
• Child headed households: Family not ready to get involved in the child’s HIV/AIDS issues, pregnancy issues vs. service provider attitudes
• Attitudes and skills: Adherence, Team, Cultural and religious beliefs towards girls, pregnancy and reproduction; Affects youth friendly; Lack skills handling adolescents with physical disability
• Integrating services affecting adolescent under 1 roof: Transition into adulthood
• Poverty: School, food, adherence, prostitution, suicide
• Counselling board: Formal recognition by other professions is needed