Upholding family relationships in a context of increasing awareness of parental illness

Abstract: Background Children are affected when parents are ill and health care professionals are bound by law to consider children’s need for information on their parent’s illness. Effective interventions are available in settings other than primary health care, and possibilities seen by GPs and families have been described previously. Most patients in Sweden are treated in primary health care. It is suspected that parental health problems treated in primary care create a challenge and risk for the children. It is unknown how children and parents negotiate this situation and what strategies they use. Aim The overall aim was to conceptualize the situation of ill parents and their children in primary health care, as a contribution towards the long-term goal of developing suitable and sustainable interventions for children as next of kin in primary care. Methods Analysis of interviews with 32 parents and 23 of their children in three primary health care clinics using grounded theory method resulted in a conceptualization of (i) how these children view their situation (Study I) and (ii) a theory on the processes and typologies of upholding family relationships from the perspective of their parents (Study III). A systematic review exploring interventions for children of ill parents in all health care settings globally resulted in a full overview of the literature and, via content analysis, a resulting summary of what children and parents find helpful in interventions (Study II). All three studies were analytically integrated in this thesis. Results Analysis of the interviews revealed that children feel burdened and lonely when their parents are ill (paper 1) and wish their parent to reveal (paper 3). Parents are aware that their children know they are ill and wish their parents to reveal, but often feel incapable to do so. A Grounded Theory conceptualizing what it takes to uphold family relationships in a context of increasing awareness of parental illness (paper 3) was developed. Six different awareness contexts are posed (closed, concealed, suspicious, conflicted, mutual pretence and open) and how parents manage, or often fail to manage them, are conceptualized. The theory hypothesises that to reveal the parent needs to manage their common awareness context about the illness. And to manage their common awareness context the parent must comprehend the illness and the child needs. Parents and children wish primary health care to support the often-needed learning processes. (Study 1 and 3). Thirty-two studies conducted in mental health (n=22), cancer care (n=6) and HIV care (n=4) were analysed in a systematic literature review. The quantitative studies showed a small-to-moderate effect on the health of the child. Systematic content analysis of qualitative results from mental health and cancer care generated new data concerning what both children and parents found useful in interventions (increased knowledge, improved communication, improved coping strategies and better capacity to handle negative feelings) and additional benefits perceived by the parents (observed changes in their children’s behaviour, increased understanding of their own child and enjoyment of the child’s respite). A synergy arises from the three papers that comprise this study to reveal that (i) the chronically ill parent and child share the same main concern of sustaining family equilibrium; (ii) explains how their interactions can create more positive or more negative awareness contexts about parental illness and (iii) elaborates how a family can be supported to shift from one context to another. Conclusions This thesis impacted the theoretical literature on children as next of kin in primarily two ways, by making it clear that the theme child as next of kin is central, but previously overlooked, in primary health care and by contributing a theory of the detailed interactions of parent and child, showing how they manage or fail to manage their common awareness context about the parental illness. For practise this has implications. The study points out the current neglect of child as next of kin in primary health care and highlights ways in which to apply the intention of the law. It provides a conceptual framework which can be used to create an outline of suitable clinical actions, inform management of clinical reality, increase professional understanding of patients and increase parents understanding of how they can manage their awareness context with their children when ill.