Lifestyle limitations of children and young people with severe cerebral palsy: a population study protocol

Aim.  This paper is a presentation of a study protocol to establish the prevalence of orthopaedic problems (hip dislocation, pelvic obliquity, spinal deformity and contractures) and their impact on pain, function, participation and health in a population of children and young people with severe cerebral palsy.

Background.  Cerebral palsy is the commonest cause of motor impairment in childhood and is associated with life-long disability. An estimated 30% of people with cerebral palsy have severe forms and are non-ambulant. Although the underlying neurological damage is not amenable to correction, many health services are dedicated to providing therapeutic and adaptive support to help people with the condition reach their potential.

Method.  A cross-sectional survey of children and young people, aged 4–25 years with severe, non-ambulant cerebral palsy as defined using the Gross Motor Function Classification System (Levels IV and V). Study participants will be identified from a pre-existing, geographically defined case register and recruited via a healthcare professional known to them. Two assessments will be undertaken: one involving parents/carers at home and using questionnaires; the other involving the child/young person ideally in one of three settings and including X-rays if clinically indicated.

Discussion.  This study will contribute to our knowledge of the history and epidemiology of orthopaedic problems in children and young people with cerebral palsy and how these problems accumulate and impact on participation, health and well-being. The study will also identify unmet need and make recommendations for good practice in relation to the orthopaedic care and management for people with severe cerebral palsy

Holding eternity in an hour: A practical exploration of the arts in the health care of older people with dementia

This project involved creative artists working with older people with dementia and staff from two Belfast Health and Social Care Trust supported housing centres in a mixed programme of dance, painting, music and drama which culminated in an open workshop with relatives and friends of the tenants. The study steered away from traditional medical models of art/music/dance therapy where the participant is perceived as a ‘patient’ in favour of identifying the participant as a ‘student’ who avails of a life-long learning experience. A key premise was that access to the arts is a human right, especially in the context of advancing age and cognitive impairment. . According to one the tenants of Mullan Mews, the project served to ‘awaken - or reawaken - folk with dementia to the endless vista of possibility already in their lives if they will only look for it’. A phenomenographic analysis of video data generated by the project emphasises the importance of the individual experiences of participants in the programme. The evidence from these storylines gained strength from the development of a documentary-style film text that has proved successful in capturing and translating the live experience of the project participants into a supportive text that goes beyond the written word.

Constrained adoptive parenthood and family transition: Adopters' experience of unplanned birth family contact in adolescence

Adoption policy in the UK emphasizes its role in providing secure, permanent relationships to children in care who are unable to live with their birth families. Adoptive parents are crucial in providing this life-long, stable experience of family for these vulnerable children. This paper explores the experience of adoptive parenthood in the context of changes to adoptive kinship relationships brought about by new, unplanned contact with birth family during their child's middle adolescence. This contact was initiated via informal social networks and/or social media, with older birth siblings instrumental in negotiating renewed relationships. The contact precipitated a transition in adoptive family life resulting in emotional challenges and changes in parent/child relationships, which were experienced as additional to the normative transitions expected during adolescence. Parental concern as a dominant theme was founded in the child and birth sibling's stage of adolescence, coupled with constraints on adoptive parenthood imposed by the use of social media, by perceived professional attitudes and by parental social cognitions about the importance of birth ties. Adoptive parents' accounts are interpreted with reference to family life-cycle theory and implications are suggested for professional support of adoptive kinship relationships.

M level Inquiry Across Disciplinary Boundaries: Using Reflective Sketchbooks

Debates unfolding around the recent development of M Level programmes for teacher education are not unfamiliar to those being addressed in other professional disciplines such as business. A strong theme in our analysis is that reflective practitioners could be provided with a wider range of tools and methods to support them in their reflection. Considerable energies have been expended on e portfolios, but our experience of use of paper based reflective
sketchbooks suggests that they may have some distinct advantages over text-dominated electronic media. In fact such sketchbooks challenge typed text as the dominant route to learning and communication (Gilbert 1998), (New, 2005), (Hickman, 2007). Professionals in teacher education are currently exploring ways in which M level can be conceived in terms of professional learning. This is also important terrain in other professions. For example, best practice in business management involves constant innovation so that students do not experience a split between the research context of the business faculty and the experience of operating in the business situation. This is paralleled in education by the concern that trainees do not experience a split between the research or scholarly informed approach of university tutors, and the experience of practical teaching in school. Our research question is concerned with how a consciously developed reflective sketchbook method can generate levels of critical thought that are both postgraduate and professionally valued in the workplace. We are also interested in the contribution this form of enquiry at M Level can make in terms of life long learning.

Impact of abuse and neglect on the health and wellbeing of children:Child sexual abuse

During the past 30 years, the focus on the extent and nature of child abuse and neglect has been coupled with an increasing interest in the impact on children’s development, health and mental wellbeing. Child maltreatment is both a human rights violation and a complex public health issue, likely caused by a myriad of factors that involve the individual, the family, and the community. Child abuse includes any type of maltreatment or harm inflicted upon children and young people in interactions between adults (or older adolescents). Such maltreatment is likely to cause enduring harm to the child.
The different forms of abuse and neglect often occur together in one family and can affect one or more children. These include, in deceasing level of frequency: neglect; physical abuse and non-accidental injury; emotional abuse; and sexual abuse (Cawson et al, 2000; 2002). Recently, bullying and domestic violence have been included as forms of abuse of children.
There is a sizeable body of literature on the relationship between types of child maltreatment and a variety of negative health and mental health consequences. These include biological, psychological, and social deficits (for reviews, see Crittenden, 1998; Kendall-Tackett, 2001; 2003). Aside from the serious physical and health consequences of child maltreatment, several emotional and behavioural consequences for children have been noted in the literature.

Quality end-of-life care in long-term care facilities:Service providers' perspective

The goal of this project was to provide guidance on what constitutes quality end-of-life care in long-term care (LTC) facilities. Seventy-nine direct care providers from six LTC facilities participated in 12 focus groups. The focus group discussions examined what made the difference between a "good" death and a "bad" death, and what changes in LTC would improve the care of dying residents. Analyses of the focus group data revealed six themes that contribute to quality end-of-life care in LTC facilities: responding to resident needs, creating a homelike environment, supports for families, providing quality care processes, recognizing death as a significant event, and having sufficient institutional resources. These findings challenge policy makers and providers to consider how to normalize life and death in LTC facilities.

The last word:Family members' descriptions of end-of-life care in long-term care facilities

A postal survey was used to collect data from family members of deceased residents of six long-term care (LTC) facilities in order to explore end-of-life (EOL) care using the Family Perception of Care Scale. This article reports on the results of thematic analysis of family member comments provided while completing the survey. Family comments fell into two themes: 1) appreciation for care and 2) concerns with care. The appreciation for care theme included the following subthemes: psychosocial support, family care, and spiritual care. The concerns with care theme included the subthemes: physical care, staffing levels, staff knowledge, physician availability, communication, and physical environment. This study identified the need for improvement in EOL care skills among LTC staff and attending physicians. As such, there is a need to implement continuing education to address these issues. © 2006 Centre for Bioethics, IRCM.

Family perceptions of end-of-life care in long-term care facilities

The study examined the utility of the Family Perception of Care Scale (FPCS), which consists of four subscales: resident care, family support, communication, and rooming. This instrument was developed for the purposes of this study. Overall, family members were satisfied with end-of-life care. Satisfaction did not have a statistically significant relationship to family and resident characteristics. Survey questions with the highest number of low satisfaction ratings included staffing levels, updating families and involving them in care planning, and decision making. Family members considered pain control an important priority, followed by comfort care that included caring for a family member with dignity and sensitivity. Family members also valued it when staff were able to inform them that the death of their family member was near. Place of death was significantly associated with satisfaction, family members being more satisfied with end-of-life care when their family member died in the LTC facility as opposed to in hospital.