Mothering and intellectual disability:partnership rhetoric?

This paper is about mothering an intellectually disabled child identified with special educational needs. It specifically looks at the parent partnership rhetoric that has dominated UK government policy and directives for nearly three decades and yet research suggests parents and more often mothers have to battle to be recognised as legitimate experts. This paper engages with sociological analysis as it highlights via qualitative narratives that mothers are weighed down by the sheer number of professionals involved in their day-to-day life. Moreover, mothers whose children are not identified in the early years are often blamed in the first instance for playing a part in their child’s difficult behaviour. This research ultimately suggests that partnership work is important and necessary for practice within health, education and social work professions, not least of all because the emotional roller-coaster that mothers experience during the assessment and statementing process is disabling.

Parental confidence in managing food allergy:development of the Food Allergy Self-Efficacy Scale for parents (FASE-P)

Background: Food allergy is often a life-long condition that requires constant vigilance in order to prevent accidental exposure and avoid potentially life-threatening symptoms. Parents’ confidence in managing their child’s food allergy may relate to the poor quality of life anxiety and worry reported by parents of food allergic children. Objective: The aim of the current study was to develop and validate the first scale to measure parental confidence (self-efficacy) in managing food allergy in their child. Methods: The Food Allergy Self-Efficacy Scale for Parents (FASE-P) was developed through interviews with 53 parents, consultation of the literature and experts in the area. The FASE-P was then completed by 434 parents of food allergic children from a general population sample in addition to the General Self-Efficacy Scale (GSES), the Food Allergy Quality of Life Parental Burden Scale (FAQL-PB), the General Health Questionnaire (GHQ12) and the Food Allergy Impact Measure (FAIM). A total of 250 parents completed the re-test of the FASE-P. Results: Factor and reliability analysis resulted in a 21 item scale with 5 sub-scales. The overall scale and sub-scales has good to excellent internal consistency (α’s of 0.63-0.89) and the scale is stable over time. There were low to moderate significant correlations with the GSES, FAIM and GHQ12 and strong correlations with the FAQL-PB, with better parental confidence relating to better general self-efficacy, better quality of life and better mental health in the parent. Poorer self-efficacy was related to egg and milk allergy; self-efficacy was not related to severity of allergy. Conclusions and clinical relevance: The FASE-P is a reliable and valid scale for use with parents from a general population. Its application within clinical settings could aid provision of advice and improve targeted interventions by identifying areas where parents have less confidence in managing their child’s food allergy.

Developing a tool to support communication of parental concerns when a child is in hospital

The involvement of parents in their child’s hospital care has been strongly advocated in paediatric healthcare policy and practice. However, incorporating parental worries about their child’s condition into clinical care can be difficult for both parents and healthcare professionals. Through our “Listening To You” quality improvement project we developed and piloted an innovative approach to listening, incorporating and responding to parental concerns regarding their child’s condition when in hospital. Here we describe the phases of work undertaken to develop our “Listening To You” communications bundle, including a survey, literature review and consultation with parents and staff, before findings from the project evaluation are presented and discussed.

Parenting a child with chronic illness as they transition into adulthood:a systematic review and thematic synthesis of parents’ experiences

Objective - To understand how parents view and experience their role as their child with a long-term physical health condition transitions to adulthood and adult healthcare services. Methods - Five databases were systematically searched for qualitative articles examining parents’ views and experiences of their child’s healthcare transition. Papers were quality assessed and thematically synthesised. Results - Thirty-two papers from six countries, spanning a 17-year period were included. Long-term conditions were diverse. Findings indicated that parents view their child’s progression toward self-care as an incremental process which they seek to facilitate through up-skilling them in self-management practices. Parental perceptions of their child’s readiness, wellness, competence and long-term condition impacted on the child’ progression to healthcare autonomy. A lack of transitional healthcare and differences between paediatric and adult services served as barriers to effective transition. Parents were required to adjust their role, responsibilities and behaviour to support their child’s growing independence. Conclusion - Parents can be key facilitators of their child’s healthcare transition, supporting them to become experts in their own condition and care. To do so, they require clarification on their role and support from service providers. Practice Implications - Interventions are needed which address the transitional care needs of parents as well as young people.