Table 3 Situational Vulnerabilities and indicators of agency revealed through parent initiatives

Within the household and in the wider community

Intrapersonal

- Main carers’ and others’ poor physical and mental health and well-being

- Anxieties about the health and well-being of the child

Interpersonal - Complex family situations and dynamics

- Family members living in households split geographically: access to main income earners difficult

- Changes in living arrangements with negative implications for the child e.g. birth of a younger sibling leads to cessation of breast-feeding

- Main carers often do not have decision-making power over household resources and treatment-seeking actions. Delays in seeking care can result from advice or demands of important decision-makers, including husbands and the parents (in-law), especially grandmothers

- Some main carers face psychological or physical abuse from other household members

Environmental – socio-economic and cultural

- Lack of rapid access to funds and competing demands for those funds: Having to skip meals; cannot provide/sustain recommended foods; Low income restricts amount can borrow and get on credit

- Finances required to travel to facilities, or to pay for facilities not available, or accessible to main carer: can delay treatment-seeking action, and those actions can further impact on income level or ability to earn

- Perception of disease severity or cause leads to delays: Symptoms perceived as normal for prolonged periods, or to require treatment from healers

Intrapersonal

Observed in the many treatment-seeking actions taken by mothers, and their determination to do the best they can in their circumstances:

- Visiting many facilities

- Shifting, repeating and mixing sources of care as seen necessary and appropriate

- Accessing care on credit

Interpersonal - Accessing support from others in the home and community

- Seeking out and acting on advice on where to seek help for the child

- Negotiating to secure funds or loans from husbands, others family members and neighbours

- Working with for e.g. mothers-in-law and neighbours to convince the husband of the need for money or for a treatment-seeking action

- Negotiating for delays in paying rent or pulling other children out of school to save money

- Seeking and giving practical, emotional and advisory support from other parents

Environmental – socio-economic and cultural, and institutional

- Avoiding certain facilities as perceived to offer poor quality

- Reorganising living arrangements such as moving child to live in another home

- Rethinking foods giving, feeding arrangements and hygiene practices in the home

- Seeking extra and cancelling work as needed or possible to help meet treatment-seeking needs

- Demanding information and support from health providers, cleaners, security guards and others in health facilities

Interactions with health facilities and other similar institutions

Intrapersonal

- Emotional and practical concerns about the child, quality of care, costs and needs of others

Interpersonal - Power relations between some staff and parents

- Being treated with disrespect can lead to fear to ask questions or share necessarily information with staff

- Parents unable to demand more attention for their children, and lack of trust in care and advice given

Environmental – socio-economic and cultural, and institutional

- Lack of familiarity with, cost or distance from desired health care services leads to delay in access

- Perceived poor quality of care – either technical or inter-personal

- Cost burdens adding to family concerns, and – where incurred – to low availability of funds in households (e.g. transport costs, consultation and treatment costs, nappies and admission costs in hospitals)

- Referral and continuity of care - recommended therapeutic feeds not available in facilities and being given conflicting advice; little mention of health care workers or community-based support