Awareness of parental illness: a grounded theory of upholding family equilibrium in parents on long-term sick-leave in primary health care.

OBJECTIVE: To understand the main concern of chronically ill parents and how they resolve this concern in relation to their children. DESIGN: Grounded theory. SETTING: Three primary health care clinics in Sweden. SUBJECTS: Thirty-two interviewed parents and their children. MAIN OUTCOME MEASURES: Processes and typologies of upholding family relationships. RESULTS: A concern of chronically ill parents is sustaining family equilibrium, achieved through a process of upholding family relationships. How a parent upholds depends upon his/her comprehension of the illness and of their child's need for parenting. In response to the parent's upholding behaviours, children mirror the effect of the illness to the parent, the child's specific behaviour depending on his/her level of comprehension regarding the parent's illness. Their combined behaviours create an awareness context that may be closed, concealed, suspicious, conflicted, mutual pretence or open.When the parent drives and facilitates the evolution of comprehension, the context quickly evolves from closed to open. When the parent hinders the process by masking and resisting the child responds by probing and proving and they become locked into a suspicious or conflicted awareness context with high relational tension. To create family equilibrium the parent needs to reveal and facilitate the awareness process. CONCLUSION: Parents on long-term sick leave in primary health care can need assistance to facilitate the awareness context of themselves and their child.Implications: Clinicians can identify the current awareness context of their patient and help their patient towards increased understanding of their illness; their child's needs and the parental capacities needed to reveal the illness and its impacts.Key PointsChildren are affected when parents are ill; they wish 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 in Scandinavian primary health care have been previously described. There is a knowledge gap in how parents view themselves and their parenting when ill in primary health care. An analysis grounded in interviews was needed to generate a hypothesis (theory) of parental concerns and behaviours.This theory proposes that an important concern of chronically ill parents is to sustain family equilibrium, which they attempt to do by upholding family relationships.Specific upholding behaviours include masking, resisting, colluding, and revealing. In response, children will engage in mirroring behaviours. Which paired behaviours are enacted will depend upon the respective levels of comprehension of parent and child regarding the illness and on the child's need for parenting. In their interactions, parent and child create one of six awareness contexts.Identifying the current awareness context in the family about chronic parental illness provides clinicians with a conceptual tool to better support those families locked in suspicious or conflicted awareness contexts.

Informing children of their parent's illness: A systematic review of intervention programs with child outcomes in all health care settings globally from inception to 2019.

INTRODUCTION: Children are impacted when parents are ill. This systematic review gives an overview of the current state of research and extracts what children and parents found helpful in the interventions aimed at informing children of their parent's illness. METHODS: This review was registered with PROSPERO and conducted in accordance with PRISMA guidelines. Five health and social science databases were searched from inception to November 2019 to identify original, peer-reviewed articles in English describing effective interventions. The authors selected and reviewed the studies independently, and any inconsistencies were resolved by discussion in face-to-face meetings and emails. A descriptive synthesis of evidence-based concepts from quantitative and qualitative studies was conducted. RESULTS: A total of 13 892 titles and 144 full-text articles were reviewed with 32 selected for final inclusion, 21 quantitative, 11 qualitative and no mixed-method studies published from 1993 to November 2019. Most of the research was conducted in mental health, including substance abuse (n = 22), but also in cancer care (n = 6) and HIV care (n = 4). Most studies using quantitative method showed a small to moderately positive statistically significant intervention effect on the child's level of internalized symptoms. Content analysis of the results of studies employing qualitative methodology resulted in four concepts important to both children and parents in interventions (increased knowledge, more open communication, new coping strategies and changed feelings) and three additional concepts important to parents (observed changes in their children's behavior, the parent's increased understanding of their own child and the relief of respite). CONCLUSIONS: In the literature there is evidence of mild to moderate positive effects on the child's level of internalized symptoms as well as concepts important to children and parent's worth noting when trying to bridge the still existing knowledge gaps. In further efforts the challenges of implementation as well as adaptation to differing clinical and personal situations appear key to address.