Damhnat McCann

The daily patterns of time use for parents of children with complex needs: A systematic review

The aim of this systematic review was to critically examine the research that quantifies and describes the daily patterns of time use by parents of children with complex needs. Four electronic databases were searched. A total of 32 studies (30 peer-reviewed journal articles and two theses) met the inclusion criteria. Three key findings emerged from the review: (a) Parents of children with complex needs carry a significant caregiving burden that often does not reduce as the age of the child increases, (b) supervision or ‘vigilance’ is a category of childcare that carries a particular time requirement for these parents and (c) parents of children with complex needs spend (sometimes considerable) time undertaking health care–related tasks outside the ‘normal’ parenting role. The time demands placed on parents caring for a child or children with complex needs at home should be considered when health professionals are negotiating essential and/or additional therapies or treatments to be included in a child’s home care regime.

The needs of parents of hospitalized children in Australia

The aim of this study was to compare the perceptions of needs held by parents of hospitalized children with those held by the staff caring for them. Family-centred care is a central tenet of paediatrics and should encompass all aspects of the child and familys experience of hospitalization. Important to this are the needs of parents when their children are hospitalized. A widely used and validated tool was used with a convenience sample in paediatric facilities in a childrens hospital in Australia. Some differences were found between parents and staff for scores for perceived importance of the 51 needs included in the questionnaire, and whether or not they were being met satisfactorily during childrens hospital admission, although there were no consistent patterns. Parents declared themselves more independent than the staff perceived them to be. These findings facilitate improvements in communication between parents and staff and can be included in education programmes for both.

Seeking respite: issues around the use of day respite care for the carers of people with dementia

ABSTRACT Ageing in Place policies have transferred responsibility for many frail elderly people and those living with dementia from residential to in-home care. Despite this placing a greater obligation on families, in Australia carers continue to under-use day respite services. This qualitative design study identified issues around the use of day respite care from the perspective of the family carer, focusing on barriers to attendance and strategies to facilitate attendance. Telephone interviews were held in 2007 with Tasmanian carers whose family member refused to attend day respite care (ten carers) and those whose family member attended (17). Carers considering day respite care were often overwhelmed by the quantity of information, confused about the process, and worried about the recipients safety in an unfamiliar environment. They felt anxious about public acknowledgement of the condition leading to fear of embarrassment. Day respite care users appreciated the break it provided them and the opportunity for their family member to socialise. To facilitate a greater uptake of day respite care, reliable information sources and strategies to help carers deal with the emotions they face on a daily basis, together with a wider social acceptance of dementia, are important. Furthermore, carers need an opportunity to talk with others, enabling them to gain support from those who have successfully introduced a family member to day respite care.

Sleep Deprivation Is an Additional Stress for Parents Staying in Hospital

PURPOSE This study aims to describe the sleep experience of parents staying overnight with their children in hospital. DESIGN AND METHODS Parents (n = 102) completed the Verran and Snyder-Halpern Sleep Scale following a night spent with their children in an Australian tertiary pediatric hospital. RESULTS Parents experienced sleep deprivation and poor quality of sleep, reporting a mean sleep period of 4.6 hr (SD = 2.1). Having only one child in the room was the only variable that significantly influenced the quality or amount of parental sleep. PRACTICE IMPLICATIONS Parental sleep deprivation needs to be acknowledged and accommodated when nurses and parents negotiate the care of children in hospital.

Sleep Deprivation in Parents Caring for Children With Complex Needs at Home: A Mixed Methods Systematic Review

A significant number of children with a range of complex conditions and health care needs are being cared for by parents in the home environment. This mixed methods systematic review aimed to determine the amount of sleep obtained by these parents and the extent to which the child-related overnight health or care needs affected parental sleep experience and daily functioning. Summary statistics were not able to be determined due to the heterogeneity of included studies, but the common themes that emerged are that parents of children with complex needs experience sleep deprivation that can be both relentless and draining and affects the parents themselves and their relationships. The degree of sleep deprivation varies by diagnosis, but a key contributing factor is the need for parents to be vigilant at night. Of particular importance to health care professionals is the inadequate overnight support provided to parents of children with complex needs, potentially placing these parents at risk of poorer health outcomes associated with sleep deprivation and disturbance. This needs to be addressed to enable parents to remain well and continue to provide the care that their child and family require.

Family Caregivers' Experiences of Caring for a Relative With Younger Onset Dementia: A Qualitative Systematic Review.

Family caregiving for people with younger onset dementia affects everyone in the family unit. This article presents findings of a qualitative systematic review exploring the experiences of family caregivers of persons with younger onset dementia. A systematic search resulted in the inclusion of five relevant articles, and two groups within the family unit were identified—child caregivers and adult and spousal caregivers. Using the thematic synthesis approach, five themes emerged: dementia damage, grief for loss of relationship, changes in family roles, positive and negative impacts of family caregiving, and transition to formal care. The review findings support increasing evidence that despite the stress of caring for a person with dementia damage, family members have the capacity to cope, adapt, and grow through their experiences. Nurses can assist families to identify their unique strengths and enhance family resiliency so they can navigate the “lonely road” of younger onset dementia.

Does continuous partial attention offer a new understanding of the required vigilance and associated stress for parents of children with complex needs

Keywords: complex needs; continuous partial attention; parents; special healthcare needs; time use; vigilance

Transforming Home: parents’ experiences of caring for children on the autism spectrum in Tasmania, Australia

Abstract As the private dwelling becomes the preferred site of care for individuals with a variety of complex needs, there has been a burgeoning interest in housing adaptations and the impact on experiences of home. The majority of studies are situated within the contexts of ageing, the disabled body and chronic medical conditions. In this paper, we present the results of a self-directed photography pilot study exploring the experience of carers of children on the autism spectrum in Tasmania, Australia. The findings highlight the multifarious and exacting negotiations required to meet the complex and idiosyncratic needs of children with autism and those of other family members. A key theme is a heightened need for containment enacted through micro-scale modifications to the physical fabric and spatial organization of the dwelling and through less tangible but pervasive practices and routines. The multiple constraints and extensive impact on families emphasize an urgent need for targeted research, policy development and support for this population.

Brief Report: Competence, Value and Enjoyment of Childcare Activities Undertaken by Parents of Children With Complex Needs

UNLABELLED Parents combine many roles when caring for a child with complex needs, but few studies measure parental value and enjoyment of childcare related activities. This study aimed to describe parental competence, enjoyment and value of childcare related activities, particularly healthcare related activities, when parenting a child with complex needs. DESIGN AND METHODS This was a pilot cross sectional study. Ten mothers of children with complex needs rated their competence, value and enjoyment of 156 childcare related activities using the Occupational Questionnaire (Smith, Kielhofner, & Hawkins Watts, 1986). RESULTS The mothers rated childcare related activities as important and rated themselves as competent to undertake them. Mothers disliked performing healthcare related activities, but enjoyed emotional care activities. CONCLUSION This study extends the current knowledge regarding the role tension described by parents of children with complex needs. The finding that parents dislike performing healthcare related activities despite self-reporting high levels of competence warrants further investigation. PRACTICE IMPLICATIONS Gaining a better understanding of the role tension described by parents of children with complex needs may enable pediatric nurses to better understand the impact of home based care provision on parents and assist them to find ways to support families so this care can continue to be provided.

Parenting children with complex needs.

Home care is now the expected model of care for children with complex needs. For the parents who assume the majority of the care for these children, the role requires extraordinary physical, emotional, social and financial resources (Murphy et al., 2007; Strunk, 2010). This special issue of Journal of Child Health Care recognises the care provided by parents of children with complex needs, through research spanning more than a decade. The research includes parents of children with Down Syndrome, life limiting or threatening conditions, physical, cognitive and learning disabilities, communicative disability, complex health needs, and technology dependence. Six of the studies involve qualitative research with parents (mainly mothers), one study (Hewitt-Taylor 2005) describes a survey of service providers, and the systematic review (McCann et al., 2012) includes 32 studies involving parents caring for a child with complex needs.