Andrew: a journey – a parents' perspective

Wray, Dana; Wray, Siobhan

doi:10.1111/j.1365-2214.2004.00394.x

Cited by 4 publications

(2 citation statements)

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“…Both are considered ‘progressive conditions without curative treatments, where intervention is exclusively palliative, although it may continue for many years’ (9). Families report the sheer complexity and interaction of symptoms children experience that necessitates considerable management support (10). The frequency, intensity and distress of a symptom and its occurrence, contribute to its impact (11) and also complicate its effective management (12–14).…”

Section: Introductionmentioning

confidence: 99%

Challenging symptoms in children with rare life‐limiting conditions: findings from a prospective diary and interview study with families

et al. 2012

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Section: Introductionmentioning

confidence: 99%

Challenging symptoms in children with rare life‐limiting conditions: findings from a prospective diary and interview study with families

et al. 2012

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“…The challenges families and professionals face in recognizing and managing the myriad of symptoms in children and young people with nonmalignant LLCs have been previously recognized; however, there is an absence of documented evidence on the specific symptom profiles present in each LLC. [5][6][7] Emond and Eaton 8 suggest a number of explanations for the dearth of published scientific evidence in this area, including the complexity and rarity of many LLCs, and highlight the need for robust clinical studies to address the broad research agenda.…”

Section: Introductionmentioning

confidence: 99%

Challenging symptom profiles of life-limiting conditions in children: a survey of care professionals and families

et al. 2011

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This paper reports on data from the initial phase of a UK-wide study exploring life-limiting conditions (LLCs) in children where, because of their rarity, little is understood regarding the significant symptom challenges of families and care professionals who support them. In this initial phase, care professionals (n=43) and families (n=16) completed a survey to identify which rare LLCs present symptom challenges and which individual symptoms prove difficult to manage. Findings led to the prioritization of mucopolysaccharidoses, Batten Disease and leukodystrophy. Care professionals' rationales for selecting these conditions included the presence of symptoms that are very difficult to manage, a requirement for additional clinical evidence to support symptom management, and the progressive nature of these diseases where symptoms frequently change and are difficult to predict. Families identified symptoms such as behavioural difficulties, visual impairments and communication impairments as those being most difficult to manage and having most impact on quality of life for children and families.

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The perceptions and preferences of parents of children with tracheostomies in a study of humidification therapy

McNamara

Dickinson

Byrnes

2009

J Child Health Care

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This article reports a grounded theory study which was the qualitative phase of a randomized-controlled trial in children with tracheostomies comparing two techniques for providing humidified inspired gases. Semi-structured interviews were conducted with eight mothers of children with tracheostomies recruited from the trial, one mother who was not involved in the trial and four experienced nurses. Data were analysed using open, selective and theoretical coding. A core category was identified of parents managing the child's care in response to a set of problematic and constraining states. Parents were seen to utilize strategies of constant checking, becoming the expert, the family pulling together and electing to use preferred technology. The findings of this study mirror those of previous studies and reinforce the primacy of caregivers as managers of their child's health care. Mothers elected to use or not use a given technology within this context, utilizing a process of balancing.

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Andrew: a journey – a parents' perspective

Cited by 4 publications

References 0 publications

Challenging symptoms in children with rare life‐limiting conditions: findings from a prospective diary and interview study with families

Challenging symptoms in children with rare life‐limiting conditions: findings from a prospective diary and interview study with families

Challenging symptom profiles of life-limiting conditions in children: a survey of care professionals and families

The perceptions and preferences of parents of children with tracheostomies in a study of humidification therapy

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