Linsey Howie

Impact of caring for a school‐aged child with a disability: Understanding mothers’ perspectives

AIM Children with a disability are reliant on a capable, healthy and well-resourced carer. Most often the childs mother provides the care that ensures the childs health, service access and community integration are attended to successfully. Through in-depth interviews with mothers and professionals, this study explores issues that challenge the mothers performance in her very important role as a caregiver. METHOD Qualitative methodology(n=8)resulted in verbatim transcriptions that were analysed and categorised, and common themes were derived. RESULTS Participants identified a multitude of challenges related to issues surrounding the child, maternal characteristics, the family, services and the community. Emotional distress and mental health issues were reported. CONCLUSION Many aspects of caregiving can be relentless and challenging. Occupational therapy clinical implications aimed at supporting mothers and their children are discussed.

Being in pain: a phenomenological study of young people with cerebral palsy

This study explored the experience and impact of chronic pain on the lives of adolescents and young adults with cerebral palsy (CP). Six participants with CP (four males, two females; age range 14‐24y) who were known to experience chronic pain participated in individual in‐depth interviews. Five participants had quadriplegia and used wheelchairs; one had left hemiplegia and walked independently. Pain was located in the hips, back, bladder, and upper limbs. Interviews were analyzed using a six‐step phenomenological process. Participants in the study were found to live with constant pain that was difficult to relieve and pervaded their lives. They often felt isolated and became frustrated due to their loss of independence and inability to participate in activities. Participants indicated the importance of having their experience of pain acknowledged, supporting the need for greater attention to ongoing holistic management. Further research into effective interventions may enable increased activity participation and prevent later chronicity.

Development of the Assistance to Participate Scale (APS) for children's play and leisure activities.

AIM This paper describes the development and psychometric evaluation of the Assistance to Participate Scale (APS). The APS measures the assistance that a school-aged child with a disability requires to participate in play and leisure activities from the primary carers perspective. METHOD Mixed methodology using an instrument design model was used to complete two studies. First, a qualitative research design was used to generate items and scoring criteria for the APS. Second, a quantitative study evaluated the instrument using data collected from 152 mothers with children aged 5-18 years. Statistical analysis assessed the underlying structure, internal consistency and construct validity of the APS. RESULTS Exploratory factor analysis revealed two correlated components, reflecting home-based and community-based play activities. Both subscales and the total APS scale showed good internal consistency. The APS correlated as predicted with individual domains and overall scores for other validated measures (Pediatric Evaluation of Disability Inventory caregiver scales and Pediatric Quality of Life Inventory) with correlations ranging from rho = 0.42 to rho = 0.77. The APS was able to discriminate between groups of children based on type of schooling (regular or segregated), need for equipment/assistive devices, frequency of lifting and disability. CONCLUSIONS The APS provides professionals with a brief psychometrically sound tool that measures the amount of caregiver assistance provided to a child with a disability to participate in play and recreation. The APS may be used as an outcome measure and to evaluate and predict the amount and type of additional assistance families need to facilitate their childs participation in an important aspect of the childs daily life and development: play and recreation.

Self-reported mental health of mothers with a school-aged child with a disability in Victoria: a mixed method study.

Aim:  This research investigated the mental health of mothers of school‐aged children with disabilities in Victoria, Australia.

Relationships between sleep disruptions, health and care responsibilities among mothers of school-aged children with disabilities

Sleep problems are more common among children with disabilities. Mothers are likely to provide night‐time care. Mothers of children with disabilities are known to experience high levels of stress and mental health issues compared with other mothers. Relationships between a childs sleep problems, and chronic maternal sleep interruption and subjective health have not been researched.

Barriers to maternal workforce participation and relationship between paid work and health

BACKGROUND Families of children with disabilities experience extra financial strains, and mothers are frequently unable to participate in paid work because of caregiving obligations. METHODS A mailed survey and follow-up phone calls were used to gather data about mothers health, workforce participation and barriers to inclusion in the workplace (n = 152). Verbatim reports of issues that hindered workforce participation were analysed qualitatively to derive themes. Maternal health-related quality of life (HRQoL) was measured using the Short Form Health Survey Version 2 (SF-36v2). Norm-based conversions were used to compare HRQoL between working and non-working mothers and to compare to population norms. RESULTS Eighty-two per cent of mothers in the sample wanted and needed to work for pay but indicated over 300 issues that prevent their work participation. Data analysis revealed 26 common issues which prevent work participation. These issues fit into three main categories: mother-related reasons (28%), child-related reasons (29%) and service limitations (43%). Mothers who worked (n = 83) reported significantly better HRQoL than mothers who did not work (n = 69) on five of the eight SF-36v2 dimensions and overall mental health. CONCLUSIONS Compared to other working Australians, mothers in this study had higher education yet reported poorer health, lower family income and lower workforce participation. Respondents reported that service system limitations were the main barriers to participation in the paid workforce. Investigation of service changes such as increased respite care, availability of outside hours school care, improved professional competency and family-centred services is recommended in order to improve maternal participation in paid work.

Adapting To Widowhood Through Meaningful Occupations: A Case Study

Widowhood is a likely event for older women in Western society. As a result, occupational therapists working in gerontology are increasingly concerned with the health issues of older women, including those connected with the experience of widowhood. Although studies on widowhood are readily available, most of these studies are quantitative in nature, and little has been published from an occupational therapy perspective. This qualitative case study, through a series of three in-depth interviews, aimed to explore and interpret an understanding of how daily occupations are experienced in widowhood. The results of this study revealed the significance of occupational adaptation to widowhood. That is, active engagement in familiar, meaningful occupations facilitated an older woman to adapt to the death of her spouse(s). Results indicated that active engagement in meaningful occupations, particularly in the company of neighbours and friends, enabled this older woman to live a fulfilling and vital life in widowhood. The findings of this study suggest that occupational therapists working with older widows may consider encouraging their clients to engage in familiar, meaningful occupations, particularly in the company of others, to facilitate adaptation to the challenges of losing a spouse, and to support positive experiences in widowhood.

Looking to the future: adolescents with cerebral palsy talk about their aspirations – a narrative study

Purpose: To explore the future hopes and aspirations of adolescents with cerebral palsy (CP) with a particular focus on their reflections on engagement in leisure activities. Method: This qualitative study used narrative inquiry methodology. Ten adolescents, aged 14–16 years with CP and Manual Ability Classification System levels ranging from I–IV, were purposively sampled from a longitudinal study of leisure participation. Data were gathered during two face–face interviews conducted approximately 1 month apart. Between interviews, photographs were taken by the adolescents to represent their visions of their future aspirations. In accordance with narrative inquiry methodology, the results were presented as individual stories constructed by the researcher. These narratives were subsequently analysed to produce themes representing the participants’ reflections on their future. Results: Three themes were developed: (i) Keeping close relationships, (ii) Choosing a future life of one’s own, (iii) Leisure in the years ahead. All the adolescents had aspirations for education, work, leisure and living situation. Conclusion: This study highlights the value of seeking information from adolescents with CP and suggests clinicians be aware of, and work to support their expectations for future study, employment and recreational engagement. Implications for Rehabilitation To our knowledge, this is the first recent study to describe the aspirations of adolescents with cerebral palsy. The study findings reinforce the value of seeking information directly from the adolescents themselves. These adolescents with cerebral palsy had clear aspirations for future education, work, fun, friendship and travel. Although these aspirations seem common to us all, recent research into adult outcomes suggests adolescents with cerebral palsy will need focused support to attain their goals. The results highlight the need for educational and health professionals to be future-focused, to take a lifespan perspective, when working with adolescents with childhood disability.

Development of the Child's Challenging Behaviour Scale (CCBS) for mothers of school‐aged children with disabilities

BACKGROUND Caring for a child with a disability can be especially difficult when the child exhibits challenging behaviours. Childhood disability often calls for the mother to be conscientious, capable and organized to meet the childs health and developmental needs. Mothers are known to feel particularly stressed when their child also behaves in ways that are difficult to manage. In these circumstances maternal mental health may be compromised and mothers therefore need more support. The Childs Challenging Behaviour Scale (CCBS) is an 11-item scale that measures a mothers report of challenging behaviours exhibited by their child with disability, that are associated with compromised maternal mental health and caregiving difficulties. This paper describes the initial development and psychometric evaluation of the CCBS. METHODS A mixed methodology instrument design model was used to develop the CCBS. A qualitative study generated items, and quantitative data were collected from 152 mothers of a child with a disability. RESULTS The CCBS showed excellent internal consistency (Cronbachs alpha = 0.89) and factor analysis supported its unidimensionality. Construct validity was supported by correlations with the PedsQL Psychosocial Health Summary Score (rho =-0.51) and cooperation taking medication (rho = 0.40). There were significant differences in CCBS scores between groups of children with and without either autism or psychiatric conditions. The CCBS showed moderate correlations with self-reported health status; the mothers sense of empowerment (rho =-0.44); and family cohesion (rho =-0.30). Mothers with a mental health condition recorded significantly higher CCBS scores. CONCLUSIONS The CCBS is a brief, psychometrically sound instrument that provides clinicians with a new tool that measures a mothers rating of their childs behaviours that are challenging and associated with reduced maternal well-being. The CCBS assists professionals to identify mothers and family situations who may be in need of more support and interventions.

Forgotten family members: the importance of siblings in early psychosis

This paper reviews the evidence on the significance of sibling inclusion in family interventions and support during early psychosis.