Wiley-blackwell

Aim: This qualitative study examined the lived experience of associative stigma for parents of adolescents at clinical high risk for psychosis. A central goal was to empower families to tell their stories and to use the themes that emerge from this narrative data to make recommendations that might support families coping with a loved one being diagnosed with risk for psychosis. Methods: Twelve parents of adolescents diagnosed with the clinical high risk for psychosis syndrome were interviewed using a semi‐structured approach.

Background: Caregivers' experiences during early intervention of their infant with special needs have consequences for their participation in the intervention. Hence, it is vital to understand caregivers' view. This study explored caregivers' experiences with the family‐centred early intervention programme "COPing with and CAring for infants with special needs" (COPCA). Methods: The data of this qualitative study were collected after 6 months of COPCA intervention in 15 families with an infant with special needs.

Background: The correct use of inhalation devices is essential for successful therapy. We aimed to evaluate the skills in the use of a spacer device with an metered-dose inhaler (MDI) and factors that influence this skill in asthmatic preschool children's caregivers. 

Methods: The caregivers of 12-month-old to 72-month-old children were interviewed face-to-face and filled out questionnaires. To assess use of the spacer device, we asked the caregivers to verbally describe and demonstrate how they used the device.

Background: Children with chronic kidney disease require specialist renal paediatric dietetic care, regardless of disease severity or geographical location; however, under‐resourcing makes this challenging. Videoconsultation may offer a solution but research exploring its acceptability is limited. The present study explored parent/carer and child perspectives of videoconsultation as an alternative or supplement to existing regional dietetic care.

The literature on how autism spectrum disorders ( ASD) impact the family unit primarily focuses on the negative experiences of parents and neurotypical ( NT) siblings. This unintentional focus may impact the therapist's ability to identify strengths within the family unit and further perpetuate the misconception that ASD is only a 'problem.' This paper reviews NT siblings' experiences of living with an ASD sibling. A solution-focused brief therapy framework is used in order to alter the covert message that an ASD diagnosis is a 'problem' for the families.

The perspective of parents whose children are in residential care, has received only minor attention in the literature, despite evidence pointing out the value of parental involvement in care delivery for their child. Drawing upon in‐depth interviews with 12 parents of adolescent girls with multiple and complex needs in residential child welfare, this exploratory study describes parents' own needs and preferences with regard to care delivery.

Background and Objective: Kidney transplantation offers greater life expectancy, quality of life and participation compared with dialysis, in children with end stage kidney disease. This study explores the perspectives and experiences of parents of children undergoing kidney transplantation, as the experiences of parents in the process of transplantation is not completely understood.

To incorporate the perspectives and experiences of family caregivers of children with obesity, the KidFit Health and Wellness Clinic, a paediatric weight management programme, embedded feedback opportunities into various stages of programme development. Caregivers were eligible to participate if their children had completed initial 4-week group-based pilot programming or were currently receiving treatment in 10 or 12 week group-based programming. Data were collected through feedback session discussions, audio-recorded, transcribed verbatim and analysed thematically.

Background: Four fifths of the estimated 150 million children with disability in the world live in resource poor settings where the role of the family is crucial in ensuring that these children survive and thrive. Despite their critical role, evidence is lacking on how to provide optimal support to these families. This study explores the impact of a participatory training programme for caregivers delivered through a local support group, with a focus on understanding caregiver wellbeing.

Background: Home enteral feeding is becoming increasingly prevalent within the UK. The use of commercial prescription formula is considered best practice; however, increasingly, patients are choosing to use blended diet via gastrostomy. There is anecdotal evidence suggesting both physical and social benefits, although there are concerns regarding the safety and efficacy of this method of feeding. The present study explores the experiences of patients who are currently using or have used this method of feeding in the past.