child's diagnosis with a chronic disease affects the entire family and puts the child in an unusual growth environment. In countries like India, the possibility of finding secondary or tertiary caregivers are costly as well as limited. In many cases, parents become caregivers for the child. In Indian culture, the responsibilities lie with the parents as the parent-child relationship is highly paternalistic, and parents decide on behalf of the child. Thus, the long term illness of the child causes caregiving responsibilities to multiply.

Caregivers are challenged to accommodate the treatment needs while addressing the existing family demands. In countries like India, the health system is highly fragmented, and the out of pocket expenses are high due to the lack of comprehensive government health plans. In this scenario, interventions play an important role in improving treatment favorable behaviors like adherence and continuity. The problem needs to be addressed from a psychosocial perspective rather than a purely economic one. Findings from the literature review show that (1) caregivers and their interactions with physicians impact adherence, (2) adherence fluctuate over time, based on the situational and contextual environment of the caregivers, (3) it is important for interventions to last long to produce the intended effect in the LTPI context, (4) physicians create value through the care delivery process and have substantial potential for intervention design, (5) value perceptions influence behavioral intentions, and (6) presence of proxy receivers of care in the pediatric context complicates TFBs like adherence.

The objectives of this study are (a) to identify the components of the primary caregiver's perception of the physician's value with reference to the effectiveness of consultation and relationships with the former (b) to establish the role of this perception in designing dynamic interventions, (c) to establish the caregiver’s value perception’s potential influence on adherence, and (d) to explain the effect of the caregiver's burden on the relationships between perceived value, dynamic interventions, and adherence. We defined communication and consultation as the functional component and relationship as the emotional component of the caregiver's perception of the physician. We proposed a theoretical model that incorporates intervention as an integral component of care. Our study employed a mixed-method study design to explore the nature of the caregiver's perceived value of the physician and explain its relationship to dynamic intervention design and adherence. A sample of 115 caregivers of children under treatment for Acute Lymphoblastic Leukemia (ALL) participated in the quantitative survey phase. The quantitative analysis showed that, (1) intervention is perceived as part of care, (2) care impacts adherence through the intervention, (3) primary and secondary burden affects adherence in different ways, and (4) in the presence of dynamic interventions, the secondary (non-treatment) burden affects interventions, thereby affecting adherence indirectly. The insights from the quantitative strand had some contextual influence and needed further interpretation in the light of qualitative responses. The qualitative strand employed coding, sentiment analysis, typological analysis, joint displays, and a hierarchical value map analysis. The analyses showed that physicians fall in a delicate circle where they can act as providers of care, proxy social support, and encourage the caregivers to persist against their burden and difficulties. Based on these findings, we propose the (1) Burden-Perception window and (2) Adherence-Perception window. The burden perception window segments caregivers into four groups namely, (1) treatment-oriented, (2) intervention-oriented, (3) support-oriented, and (4) care-partnership oriented. The balance between intrinsic and extrinsic motivation (derived from the physician) of the caregivers explains how caregivers move from one stage to another stage in the window. The adherence perception window segments caregivers into four categories, namely, (1) wait-watchers, (2) short-termers, (3) passive acceptors, and (4) proactive inspirers explained using the concepts of stages of grief and proxy social support network. The window is likely to provide a "means-end" or "cost-benefit" insight into adherence and care efforts. Prepping the care efforts to move the caregivers from a lower stage to a higher stage of adherence is likely to improve the child's wellbeing and save lives. Thus, making care delivery genuinely transformative. Our study highlights the instrumental (and sometimes monetary) value of the PCPV of the physician, which manifests through interventions to aid the caregivers. Future work could focus on longitudinal studies that record interventional changes over time. It can aid in developing specific "interventional pathways." The pathways are potential stage maps that can direct the physician on what to expect in terms of intervention needs if a PC and child are on path A versus path B.

KEYWORDS: Perceived Value, Transformative healthcare, Adherence, Caregivers.