Parents' Perspectives of Cleft Lip and/or Palate Services: A Qualitative Interview.

The study aimed to explore in depth the perspectives of parents about their child's cleft services. Purposive and theoretical sampling produced a diverse sample of mothers and fathers with children aged 20 weeks to 21 years. Parents were recruited from a specialist cleft center in the U.K. Qualitative, in-depth, face-to-face interviews were carried out with 35 parents. Interviews were audio-recorded, transcribed, and analyzed using grounded theory to identify salient data categories. Findings revealed that parents' positive views about services rested on their perceptions of cleft-care practitioners as competent and trustworthy, possessing highly developed communication skills and the ability to provide continuity of care to families. At the same time, some mothers and fathers identified unmet support needs relating to information delivery and content as well as the coordination of services across the treatment course. More individualized information about treatment was desired; in particular, some parents had incomplete information about their child's surgical procedures, associated risks, and postsurgical recovery. Parents wanted better coordination of services with regard to communication about surgical cancellations, a child's transition to adult services, and having a key professional to link with throughout their child's treatment course. Routine assessments to gauge parents' needs could be built into cleft-care pathways so that more individualized information and support might be delivered to families in more consistent ways over long-term treatment.

'Doing the "right" thing': how parents experience and manage decision-making for children's 'normalising' surgeries.

Using cleft lip and palate as an exemplar, this article examines parents' decision-making for children in the context of elective treatments which aim to 'normalise' a child's function, appearance, communication or identity. Using purposive and theoretical sampling, 35 parents with children from infancy to young adulthood were recruited through a specialist cleft centre in England. Parents were interviewed in-depth between 2006 and 2008 about their beliefs and motivations in relation to treatment decision-making in this context. A grounded theory approach was used to analyse the data. Findings revealed a core category, 'doing the "right" thing', that encapsulated parents' main concern in relation to their children's treatment and highlighted several emotional, social and cultural considerations underpinning their decision-making stance. Parents fulfilled a perceived 'moral' obligation to be 'good' parents by pursuing the 'normalising' treatments, particularly surgeries, made available to their children. Such treatments were viewed as a way of facilitating their child's social inclusion and helping them reach their full potential. In order to enable their continued pursuit of treatments over the long-term, parents also constructed specialist practitioners as highly competent and particularly trustworthy. This article captures the complexities involved in parents' decision-making for children's elective 'normalising' treatments, where both functional and appearance-related concerns are involved. It suggests that social norms about parenting, physical appearance and healthcare practitioner power may significantly shape decision-making in this context, so that such choices may be viewed primarily as 'moral' rather than social. Services could support parents with such challenges, by gauging their needs for information about surgery and its likely outcomes and providing emotional/decisional support to consider all available options.

Parents' emotional and social experiences of caring for a child through cleft treatment.

Little is known about the experiences of parents caring for a child through long-term treatment for cleft lip and/or cleft palate. We conducted in-depth interviews with 35 parents with children between the ages of 20 weeks and 21 years to explore experiences across the treatment program. We analyzed the data using a constructivist grounded theory approach and present in detail in this article one subcategory from the analysis: managing emotions. Throughout childhood and adolescence, parents experienced conflicting emotions about their child's impairment, uncertainty about cleft treatment, and stigmatizing attitudes. Although parents attempted to manage emotional tensions by pursuing cleft treatments, the interventions could themselves be a source of conflict for them. We suggest that routine assessment of parents' emotional and social well-being should be included in cleft treatment programs, and access to psychosocial support made available.

Phytophthora kernoviae sp. nov., an invasive pathogen causing bleeding stem lesions on forest trees and foliar necrosis of ornamentals in the UK.

A new Phytophthora pathogen of trees and shrubs, previously informally designated Phytophthora taxon C, is formally named here as P. kernoviae. P. kernoviae was discovered in late 2003 during surveys of woodlands in Cornwall, south-west England, for the presence of another invasive pathogen, P. ramorum. P. kernoviae is self-fertile (homothallic), having plerotic oogonia, often with distinctly tapered stalks and amphigynous antheridia. It produces papillate sporangia, sometimes markedly asymmetric with medium length pedicels. Its optimum temperature for growth is ca 18 degrees C and upper limit ca 26 degrees. Currently, P. kernoviae is especially noted for causing bleeding stem lesions on mature Fagus sylvatica and foliar and stem necrosis of Rhododendron ponticum. P. kernoviae is the latest of several invasive tree Phytophthoras recently identified in the UK. Its geographical origins and the possible plant health risk it poses are discussed.

Phytophthora alni sp. nov. and its variants: designation of emerging heteroploid hybrid pathogens spreading on Alnus trees.

In 1993 a destructive new Phytophthora pathogen of riparian Alnus trees was discovered in the UK and subsequently shown to be present in other parts of Europe. The new Phytophthora comprised a group of emergent heteroploid hybrids, probably between P. cambivora and a species related to P. fragariae. These included a common, near tetraploid standard hybrid, the presumptive allopolyploid; and four scarcer major variant types with chromosome numbers intermediate between diploid and tetraploid, named the Swedish, Dutch, German and UK variants. The standard hybrid type is formally designated here as Phytophthora alni subsp. alni. The Swedish variant is designated as P. alni subsp. uniformis; and the Dutch, German and UK variants collectively as P. alni subsp. multiformis. The properties of the Dutch, German and UK variants within subsp. multiformis are informally described. The problems of designating emergent species hybrids under the International Code of Botanical Nomenclature and the reasons for the taxonomic choices made are discussed.

Phytophthora inundata sp. nov., a part heterothallic pathogen of trees and shrubs in wet or flooded soils.

A Phytophthora pathogen of trees and shrubs previously designated Phytophthora sp. O-group is formally named as P. inundata sp. nov. P. inundata falls within the P. gonapodyides-P. megasperma major ITS Clade 6, its present nearest known relative being P. humicola. It has non-papillate sporangia, fairly large oogonia (average ca 40 microns) with thick walled oospores, amphigynous antheridia, a distinctive colony type, a high optimum temperature for growth of 28-30 degrees C, fast growth at the optimum, and a high upper temperature limit for growth of ca 35-37 degrees. A study of the breeding system of eight P. inundata isolates showed them to be classically heterothallic with A1 and A2 compatibility types. However some P. inundata A1 x A2 combinations failed to mate even though the same isolates mated successfully with P. drechsleri testers. Others were 'silent' A1s or A2s, unable to produce their own gametangia but able to induce gametangial formation in the opposite sexual compatibility type of another species. This indicates a partial breakdown of the sexual mechanism in the species. Two isolates (one A1 and one A2) were unpredictably and chimaerically self-fertile, suggesting A1 + A2 chromosomal heteroploidy. The association of P. inundata with ponds and rivers and with root and collar roots of trees and shrubs after flooding is discussed.