Qualitative situational analysis of palliative care for adolescents with cancer and HIV in South Africa: healthcare worker perceptions

Abstract

ObjectivesThe unmet palliative care need is intensified in resource-limited countries where there is inequitable access to healthcare and adolescents and young adults (AYA) fall between the cracks of paediatric and adult services. We aimed to examine palliative care for AYA with cancer and/or HIV in South Africa.DesignIndividual and small group interviews using process mapping.SettingData were collected between November 2016 and March 2017 with staff from government hospitals, hospices and clinics from three provinces of South Africa.ParticipantsHealth and social care professionals (n=30) (eg, physicians, nurses, social workers, psychologists) from KwaZulu-Natal, Western Cape and Gauteng provinces.MethodsIn this qualitative situational analysis study, participants were recruited to interviews and process mapping used to try and identify palliative care pathways of AYA with palliative care needs. We developed a thematic framework using a deductive approach to analyse the interview data.ResultsPalliative care pathways were not easily identifiable, ambiguous and varied and participants reported on their experiences and perceptions of service provision. Participants expressed that resource challenges limited the service provision. A need for nurse prescribing of pain relief at community level was mentioned as AYA are reluctant to use hospitals and clinics. Lack of (1) palliative care education among professionals, (2) public awareness and (3) adolescent-specific care posed a challenge to service provision.ConclusionsThe changing burden of HIV and increase in cancer prevalence calls for integration of palliative care in mainstream health services. Despite good policies, the pragmatic aspect of training professionals will influence a change in practice. The main task will be to absorb palliative care philosophy and practice at all levels of care to avoid overburdening the care system and to integrate it in community care programmes.

Process mapping in healthcare: a systematic review

“…Phase 2: 85% of the studies stated that data and information had been gathered to inform the PM exercise as a substitute for (55%), or in addition to (30%), the group knowledge generated in the facilitated process mapping sessions. This included evidence-based best practice recommendations [ 34 – 155 ], interviews [ 64 , 73 – 148 , 154 , 156 , 158 , 160 ], and more detailed approaches such as observations, operational data collection, time-and-motion studies, and video footage [ 48 , 78 – 81 , 141 , 143 – 146 , 150 , 159 , 163 – 169 ].…”

Qualitative Analysis of Family-centered Care for Children with Cancer in Palliative Wards: An Evaluation of Needs and Barriers in Resource-limited Settings

“…Healthcare professionals find it difficult to work with diverse families -demanding, rude, or angry parents and parents who have conflicting opinions on treatment and palliative care -while conveying bad news to them [35]. The previous studies also highlight that palliative care pathways were vague, varied, and not readily recognizable; participants reflected on their experiences and perceptions of service delivery, such as lack of palliative care education, public knowledge, and adolescent-specific treatment, which presented a challenge in service delivery [36].…”

Challenges and opportunities in providing palliative care services to children with a life-limiting illness: A systematic review

“…9 Lack of financial resources, pre-employment education regarding palliative care in children, and lack of awareness among policymakers were found to be the main obstacles at the policy level. 10,11 There is a skewed distribution of services related to palliative care in children resulting in limited access. 12 Inadequate supply of opioids for pain management, lack of financial resources, large or remote areas of coverage are major constraints to achieving the required reach and quality of services.…”

“…Difficulty in maintaining continuity of care due to inadequacy or absence of home-based care or a bridging care system from hospital to home, inadequate workforce and infrastructure of hospitals, variability of factual and emotional knowledge among parents and HCPs are major organizational barriers to the provision of palliative care for children. 10,12 Lack of trained workforce, high workload with complexity in care, low rates of referrals, and lack of partnering community service providers are the barriers to providing palliative care to children. 13 The non-governmental organizations (NGOs) providing specialized care to children focus only on patients with AIDS and cancer, with some of them exclusively focusing on adults.…”

“…13,21,26,[29][30][31][32] Cultural aspects, irrational parental hopes, and incomplete communication may also serve as a barrier to the involvement of palliative services. 10 Non-availability of support persons such as religious leaders may cause hindrance in availing the benefits of palliative care services. 33 These services are not covered by insurance, therefore reimbursement of expenses for palliative care services was found to be a barrier.…”