Table 3 Content of included papers pertaining to the key concepts from the analysis.
Authors (year) | Uncertainty and identity | Emotional response | Behavioural response | Cognitive response | Medicine and the role of professionals | Individual differences, communication and information needs |
|---|---|---|---|---|---|---|
Timmermans and Buchbinder (2010) [24] | “Patients in waiting”; “illness identity”; “A liminal state between pathology and normalcy”; “Living between health and disease”; “not sick, but not normal” | Shock; “a roller coaster ride” | “Precautions”; “actions that prove the social relevancy of [the condition]”; “preventative practices” as “measures to offset the ‘real’ disease” | “Shared patient role”; “contradictory messaging”; “Interactional dilemma”; “[irrelevance of] the usual diagnostic roadmaps”; diagnostic uncertainty “marshalled” | “A number of families in our study that were exceptions to [the] general rule [of how they understood the result and wished to be managed] [Perhaps due to] structural and cultural factors” | |
Timmermans and Buchbinder (2012) [25] | How similar to symptomatic infants? Treat as such? | Vigilance; preventative measures; “overreacting” | NBS programme not undermined | “Changed disease ontology”; “collectively negotiating the parameters of the anomaly”; “knowledge in the making”; “bridging work” | Parents’ internet use and inaccurate/ outdated information | |
DeLuca et al. (2011) [26] | “Living with a potential illness”; not a “normal life”; “something could happen” | “As if a death occurred”; “consumed by thoughts of the disorder” | Monitoring for symptoms | “Unshakable faith in the merits of newborn screening” | HCPs provide reassurance but some professionals also felt to have inadequate knowledge; importnace of personal approach | Impact of socioeconomic background; inadequate NBS knowledge; internet searching; persisting inaccuracies |
Tluczek et al. (2010) [27] | Uncertainty and ambiguity; Abnormal result/ healthy child; “always going to be this cloud hanging over” | “Initial psychological plummet”; only “worrisome content” is heard; “Frightening emotional roller coaster”; “potential loss of infant”; “emotional suffering”; “always in the back of our mind” | “Action-oriented coping”; “mobilising”; “hyper-vigilance”; “precautionary health measures” | “A roller coaster ride of trying to figure out what it all meant” | “[Professionals] help reframe the situation”; “Structure Providers” [HCPs shape interpretations] | “The Opportunity–Danger Continuum”; gender differences; impact of “cognitive resources”; “Structure Providers” [social contacts/ media shape interpretations]; Need for “facts and figures”; Need new label that does not connote the ‘true’ disease |
Hayeems et al. (2017) [28] | “Uncertainty about what an inconclusive diagnosis means”; Diagnosis v. “perfect” looking child; Fear of “potential labelling effects” | “Cascade of effects” | “Active symptom seeking”; monitoring; lifestyle changes | “Unsettled meaning”; struggle to make sense; “interested in how it all worked”; “value placed on knowledge unto itself, for most”; | “Mixed messages”; “Mixed feelings about surveillance” | |
Sadat et al. (2020) [29] | “Uncertainty” | Anxiety; helplessness; fear of child’s death; concern about future | Continuation of unnecessary treatment | Appreciation of enhanced health awareness; stress caused by the NBS result “not justified” | Mixed feelings about ongoing monitoring/ treatment | |
Johnson et al. (2019) [31] | “Liminality and Uncertainty”; “typical child” v. genetic designation; “don’t know what’s round the corner”; “there is that chance [of symptoms developing]” | Trauma; “Fear, Grief, and Threat to Child’s Life”; “bombshell”; extended issues; continued threat | “Prophylactic medical regimens”; “need to hyper-control the environment”; child’s health as “battle”; “all this prevention” | “Making certainty out of uncertainty”; “Utility of Labelling”; value of knowledge | “Challenging traditional ideas about health and illness”; “Incongruence with the Traditional Medical Model”; “moving the goalposts” [mixed messages]; “Intrusion & control” | “Information Sufficiency”; personal context; “Tension of Idiosyncratic Forms of Certainty” |
Kerruish (2011) [32] | “Between planning for adversity and hoping for the best”; anticipation of potential medical complications/short life | “Generally mild” initially; “fluctuating recurrence of worries”; “subtle, complex, dynamic and ongoing reactions” | “Behavioural modification”; monitoring; “specific practical changes”; “preparing themselves for a disease that may never eventuate” | “Process of sense-making”; “conscious process of minimisation”; “comparison strategy” to make sense of risk; “Lucky to know” | “Varied” emotional responses between parent/ intra-individually/ over time; interaction of personal and contextual factors and uncertainty; "gist" of information | |
Tluczek et al. (2019) [30] | Envisioning a “normal” future; hope for “normal” life v. awareness of special health needs | Worry about future | “Protective behaviours” | Comparing child’s health to ‘a typical CF patient’ | Complex interrelated factors influence parent perceptions of vulnerability; effect of depression and anxiety |
