Parent-Reported Quality of Life of Children With Cerebral Palsy in Europe

OBJECTIVE. The goal was to determine whether the type and severity of the child's impairments and the family's psychosocial, social, and economic characteristics influence parent-reported child quality of life across the spectrum of severity of cerebral palsy.

METHODS. Our population-based, cross-sectional survey conducted in 2004 to 2005 involved 818 children with cerebral palsy, 8 to 12 years of age, from 7 countries (9 regions) in Europe. Child quality of life was assessed through parent reports by using the Kidscreen questionnaire, and data were analyzed separately for each of its 10 domains.

RESULTS. The parental response rates were >93% for all domains except one. Gross motor function and IQ level were found to be associated independently with quality of life in most domains. However, greater severity of impairment was not always associated with poorer quality of life; in the moods and emotions, self-perception, social acceptance, and school environment domains, less severely impaired children were more likely to have poor quality of life. Pain was associated with poor quality of life in the physical and psychological well-being and self-perception domains. Parents with higher levels of stress were more likely to report poor quality of life in all domains, which suggests that factors other than the severity of the child's impairment may influence the way in which parents report quality of life.

CONCLUSIONS. The parent-reported quality of life for children with cerebral palsy is associated strongly with impairment. However, depending on the areas of life, the most severely impaired children (in terms of motor functioning or intellectual ability) do not always have the poorest quality of life.

Health status of children with cerebral palsy living in Europe: a multi-centre study

Aim The aim of this report is to describe the health status of 8–12-year-old children with cerebral palsy (CP) of all severities in Europe using the Child Health Questionnaire (CHQ).

Method A total of 818 children with CP from nine centres in defined geographical areas participated. CP type, gross and fine motor function, additional impairments were classified and family data were obtained. The CHQ was used to measure the parent's perception of their child's physical (PHY) and psychosocial (PSY) health.

Results PHY scores were lower than the reference samples with a median of 46. The severity of gross motor function influenced the CHQ scores significantly in the PHY scale with the lowest scores for children with least gross motor function. There were significant differences between the CP types in PHY with the higher scores for children with unilateral spastic and the lowest scores for children with bilateral spastic and dyskinetic CP type. Fine motor function severity significantly affected both the PHY and PSY scales. The severity of intellectual impairment was significantly associated with CHQ scores in most dimensions with higher scores for higher IQ level in PHY and PSY. Children with seizures during the last year had a significantly lower health compared with children without seizures. The results of the multivariate regression analyses (forward stepwise regression) of CHQ scores on CP subtype, gross and fine motor function, cognitive function, additional impairments, seizures, parental education and employment revealed gross motor function, cognitive level and type of school attended were significant prognostic factors.

Conclusion This report is based on the largest sample to date of children with CP. Health status as measured using the CHQ was affected in all children and was highly variable. Gross motor function level correlates with health from the PHY well-being perspective but the PSY and emotional aspects do not appear to follow the same pattern.

To what extent do children with cerebral palsy participate in everyday life situations?

The aims of the study are to describe participation of children with cerebral palsy in everyday life situations, to investigate the relationship between participation (primary outcome variable) with child and parent characteristics (independent variables) and to compare the frequency of participation (secondary outcome variable) of children with cerebral palsy with children without disabilities. A cross-sectional survey of parents of children with cerebral palsy in Northern Ireland was undertaken in families’ homes using standard questionnaires. Children with cerebral palsy born between 31/8/1991 and 1/4/1997 were identified from a case register of people with the condition. A total of 102 parents opted in (51% response rate). Questionnaires included the Life Habits Questionnaire (Life-H) to measure difficulties in participation and The Frequency of Participation Questionnaire (FPQ), to measure frequency of participation with comparative data for children without disability. Overall, children with cerebral palsy participated less often than their non-disabled peers across a number of lifestyle and cultural pursuits. Among the 102 children with cerebral palsy, participation in ‘relationships’ was the least disrupted area of everyday life and aspects of ‘school’, ‘personal care’ and ‘mobility’ were the most disrupted. Children with cerebral palsy and severe co-impairments were significantly less likely to experience higher levels of participation in most areas of everyday life when compared to children with cerebral palsy and no severe co-impairments. Child physical and psychological well-being did not influence participation although higher parenting stress was significantly related to lower child participation in ‘community activities’. Participation is an important health outcome for children with cerebral palsy and should be incorporated in routine clinical practice. Professionals have a role to play both at the level of addressing individual child and family needs as well as influencing legislation and policy to ensure improved access to services and local communities.

Behavioural and cognitive behavioural training interventions for assisting foster carers in the management of difficult behaviour.

Background The provision of training for foster carers is now seen as an important factor contributing to the successful outcome of foster care placements. Since the late 1960s, foster carer training programs have proliferated, and few of the many published and unpublished training curricula have been systematically evaluated. The advent of cognitive-behavioural therapy (CBT) and the research evidence demonstrating its effectiveness as a psychotherapeutic treatment of choice for a range of emotional and behavioural problems, has prompted the development of CBT-based training programmes. CBT approaches to foster care training derive from a ’skill-based’ training format that also seeks to identify and correct problematic thinking patterns that are associated with dysfunctional behaviour by changing and/or challenging maladaptive thoughts and beliefs. Objectives To assess the effectiveness of cognitive-behavioural training interventions in improving a) looked-after children’s behavioural/relationship problems, b) foster carers’ psychological well-being and functioning, c) foster family functioning, d) foster agency outcomes. Search methods We searched databases including: CENTRAL (Cochrane Library Issue 3, 2006), MEDLINE (January 1966 to September 2006), EMBASE (January 1980 to September 2006), CINAHL (January 1982 to September 2006), PsycINFO (January 1872 to September 2006), ASSIA (January 1987 to September 2006), LILACS (up to September 2006), ERIC (January 1965 to September 2006), Sociological Abstracts (January 1963 to September 2006), and the National Research Register 2006 (Issue 3).We contacted experts in the field concerning current research. Selection criteria Random or quasi randomised studies comparing behavioural or cognitive-behavioural-base Data collection and analysis Two authors independently assessed trial quality and extracted data. We contacted study authors for additional information. Main results Six trials involving 463 foster carers were included. Behavioural and cognitive-behavioural training interventions evaluated to date appear to have very little effect on outcomes relating to looked-after children, assessed in relation to psychological functioning, extent of behavioural problems and interpersonal functioning. Results relating to foster carer(s) outcomes also show no evidence of effectiveness in measures of behavioural management skills, attitudes and psychological functioning. Analysis pertaining to fostering agency outcomes did not show any significant results. However, caution is needed in interpreting these findings as their confidence intervals are wide. Authors’ conclusions There is currently little evidence about the efficacy of behavioural or cognitive-behavioural training intervention for foster carers. The need for further research in this area is highlighted.

Adolescent men’s pregnancy resolution choices in relation to an unintended pregnancy: A comparative analysis of adolescent men in three countries.

This paper investigates adolescent men's pregnancy resolution choices in Australia, Ireland and Italy. It addresses two main gaps in the literature: the lack of research on (adolescent) men's views on unintended pregnancy and pregnancy resolution; and the lack of international comparative case studies on men and reproductive choices. Consistent with theories of the transformation of intimacies in society and the growth of individualization, the results suggest that adolescent men are interested in the effect of an unintended pregnancy on their individual biographies as well as the effect on their girlfriend's health and well-being. However, Australian male adolescents were much more likely to choose abortion than Italian or Irish adolescents, suggesting adolescent males have also internalized country level debates surrounding abortion. Methodologically, the paper demonstrates an innovative approach to data-collection using a computer-based interactive drama to facilitate participants' deliberation and responses. It was shown to engage a large number of adolescent men and is likely to have wider generalisability in developing international comparative research on the topic, as well as applications for health promotion.

Preferences for place of care and place of death among informal caregivers of the terminally ill

Objectives: (1) To determine informal caregivers perceptions about place of care and place of death; and (2) to identify variables associated with a home death among terminally ill individuals who received in-home support services in a publicly funded home care system. Participants and design: A total of 216 informal caregivers participated in a bereavement interview. Data collection included care recipient and informal caregiver characteristics, the use of and satisfaction with community services, and preferences about place of death. Results: Most caregivers reported that they and the care recipient had a preferred place of death (77 and 68%, respectively) with over 63% reporting home as the preferred place of death. Caregivers had a greater preference for an institutional death (14%) than care recipients (4.7%). While 30% of care recipients did not die in their preferred location, most caregivers (92%) felt, in retrospect, that where the care recipient died was the appropriate place of death. Most caregivers reported being satisfied with the care that was provided. The odds of dying at home were greater when the care recipient stated a preference for place of death (OR: 2.92; 95% CI: 1.25, 6.85), and the family physician made home visits during the care recipients last month of life (Univariate odds ratios (OR): 4.42; 95% CI: 1.46, 13.36). Discussion: The ethic of self-control and choice for the care recipient must be balanced with consideration for the well being of the informal caregiver and responsiveness of the community service system. © 2005 Edward Arnold (Publishers) Ltd.

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.

Living and coping with Parkinson's disease: Perceptions of informal carers

A review of the literature highlights the important role informal carers play in the provision of palliative care in the community. In order to explore the caring experience of relatives with Parkinson's Disease (PD), interviews were conducted with 26 informal family caregivers. Interviews were taped, transcribed and subjected to content analysis. All caregivers were spouses, the majority female (n=17) and all were responsible for providing physical, social and emotional care in the home. Although they viewed care giving as their role and duty, the results highlight the widespread burden of providing care on the emotional and physical health of the caregivers. The financial implications for providing care were outlined, with many reporting difficulty in accessing benefits. From the point of diagnosis, which had a huge emotional impact on relatives and carers, carers did not feel health professionals integrated them within the caring journey. Since diagnosis, carers commented on the lack of continued and coordinated care plans for relatives, resulting in symptoms being mismanaged and care opportunities for relatives and carers missed. Stereotypes of the meaning and timing of palliative care were common with many viewing it as being synonymous with cancer and not applicable to a person with PD. As the well-being of the informal carer directly influences the care of the person with PD, support interventions are required to relieve their burden, maximize outcomes and ensure targeting of services. © The Author(s) 2010.

Adaption and adjustment of military spouses to overseas postings: An online forum study

Little research has examined the impact of being an accompanying spouse on British military foreign postings. The aim of this qualitative study was to investigate the experiences of 13 military spouses from 11 different overseas locations. Data were collected via an online forum and thematic content analysis was conducted. Key findings revealed that, regardless of the location, reactions to overseas posting varied considerably and were related to the military spouse's personality and personal circumstances, as well as their relationship with family, husband and their support networks. Spouses experienced a loss of control over their lives that was in some cases psychologically distressing. The findings corroborate and extend the findings from a previous study that was limited to one location, further highlighting the need for pre-established support resources from the military and healthcare professionals to be readily accessible for all military spouses. Importantly, such support provision may also facilitate the military spouse in regaining some control over their everyday life, enhancing their well-being and the experience for the family.

The Applicability of Two Strengths-based Systemic Psychotherapy Models for Young People Following Type 1 Trauma

This paper will consider the inter-relationship of a number of overlapping disciplinary theoretical concepts relevant to a strengths-based orientation, including well-being, salutogenesis, sense of coherence, quality of life and resilience. Psychological trauma will be referenced and the current evidence base for interventions with children and young people outlined and critiqued. The relational impact of trauma on family relationships is emphasised, providing a rationale for systemic psychotherapeutic interventions as part of a holistic approach to managing the effects of trauma. The congruence between second-order systemic psychotherapy models and a strengths-based philosophy is noted, with particular reference to solution-focused brief therapy and narrative therapy, and illustrated; via a description of the process of helping someone move from a victim position to a survivor identity using solution-focused brief therapy, and through a case example applying a narrative therapy approach to a teenage boy who suffered a serious assault. The benefits of a strength-based approach to psychological trauma for the clients and therapists will be summarised and a number of potential pitfalls articulated.

Towards a Critical Ecology of Child Development: Aligning the Theories of Bronfenbrenner and Bourdieu

Bronfenbrenner’s model of bio-ecological development has been utilized widely within the social sciences, in the field of human development, and in social work. Yet, while championing the rights of marginalised families and communities, Bronfenbrenner had under-theorized the role of power, agency and structure in shaping the ‘person-context’ interrelationship, life opportunities and social well-being. To respond to this deficit, this paper firstly outlines Bronfenbrenner’s ‘person, process, context, time’ model. Secondly, it then seeks to loosely align aspects of Bronfenbrenner’s model with Bourdieu’s analytical categories of habitus, field and capital. It is argued that these latter categories enable social workers to develop a critical ecology of child development, taking account of power and the interplay between agency and structure. The implications of the alignment for child and family social work are considered in the final section.

'A Breath of Fresh Air': The experiences of undergraduate nursing students' participating in a creative learning project:This paper presents the experiences of undergraduate nursing students who participated in a creative learning project to explore the cells, tissues and organs of the human body through felt making.

Aim of the study
This paper presents the experiences of undergraduate nursing students who participated in a creative learning project to explore the cells, tissues and organs of the human body through felt making.

Context and Background
This project was funded by a Teaching Innovation Award from the School of Nursing and Midwifery, Queen’s University Belfast to explore creative ways of engaging year one undergraduate nursing students in learning anatomy and physiology. The project was facilitated through collaboration between University Teaching staff and Arts Care, a unique arts and health charity in Northern Ireland.

Methodology
Twelve year one students participated in four workshops designed to explore the cells, tissues and organs of the human body through the medium of felt. Facilitated by an Arts Care artist, students translated their learning into striking felt images. The project culminated in the exhibition of this unique collection of work which has been viewed by fellow students, teaching staff, nurses from practice, and artists from Arts Care, friends, family and members of the public.

Key Findings and conclusions
The opportunity to learn in a more diverse way within a safe and non-judgmental environment was valued, with students’ reporting a greater confidence in life science knowledge. Self- reflection and group discussion revealed that the project was a unique creative learning experience for all involved – students, teaching staff and artist – resulting in individual and collective benefits far beyond knowledge acquisition. As individuals we each felt respected and recognised for our unique contribution to the project. Working in partnership with Arts Care enabled us to experience the benefits of creativity to well-being and reflect upon how engagement in creative activities can help healthcare professionals to focus on the individual patient’s needs and how this is fundamental to enhancing patient-centred care

Blending Art and Science in Nurse Education: The Benefits and Impact of Creative Partnerships

Blending Art and Science in Nurse Education: The Benefits and Impact of Creative Partnerships

This paper presents the benefits of an innovative education partnership between lecturers from the School of Nursing and Midwifery, Queens University Belfast and Arts Care, a unique Arts and Health Charity in Northern Ireland, to engage nursing students in life sciences

Nursing and Midwifery students often struggle to engage with life science modules because they lack confidence in their ability to study science.This project was funded by a Teaching Innovation Award from the School of Nursing and Midwifery, Queens University Belfast, to explore creative ways of engaging year one undergraduate nursing students in learning anatomy and physiology. The project was facilitated through collaboration between Teaching staff from the School of Nursing and Midwifery and Arts Care, Northern Ireland. This unique Arts and Health Charity believes in the benefits of creativity to well being.

RESEARCH OBJECTIVE(S)
To explore creative ways of engaging year one undergraduate nursing students in learning anatomy and physiology.

METHODS AND METHODLOGY
Students participated in a series of workshops designed to explore the cells, tissues and organs of the human body through the medium of felt. Facilitated by an Arts Care artist, and following self-directed preparation, students discussed and translated their learning of the cells, tissues and organs of the human body into striking felt images. During the project students kept a reflective journal of their experience to document how participation in the project enhanced their learning and professional development

RESULTS
Creativity transformed and brought to life the students learning of the cells, tissues and organs of the human body.

The project culminated in the exhibition of a unique body of artwork which has been exhibited across Northern Ireland in hospitals and galleries and viewed by fellow students, teaching staff, nurses from practice, artists, friends, family and members of the public.

CONCLUSION
The impact of creativity learning strategies in nurse education should be further explored.

REFERENCES
Bennett, M and Rogers, K.MA. (2014) First impressions matter: an active, innovative and engaging method to recruit student volunteers for a pedagogic project. Reflections, Available online at: QUB, Centre for Educational Development / Publications / Reflections Newsletter, Issue 18, June 2014.

Chickering,A.W. and Gamson,Z.F. (1987) Seven principles for good practice in undergraduate education The American Association for Higher Education Bulletin, March. http://www.aahea.org/aahea/articles/sevenprinciples1987.htm, accessed 8th August 2014

Fell, P., Borland, G., Lynne, V. (2012) Lab versus lectures: can lab based practical sessions improve nursing students’ learning of bioscience? Health and Social Care Education 3:1, 33-38

"Things I did not know”: Retrospectives on a Canadian rural male youth suicide using an instrumental photo voice case study

In Canada, it is young rural based men who are at the greatest risk for suicide. While there is no consensus on the reasons for this, evidence points to contextual social factors including isolation, lack of confidential services and pressure to uphold restrictive norms of rural masculinity. In this article we share findings drawn from an instrumental photo voice case study to distil factors contributing to the suicide of a young Canadian rural based man. Integrating photo voice methods and in-depth qualitative we conducted interviews with 7 family members and close friends of the deceased. The interviews and image data were analyzed using constant comparative methods to discern themes related to participants’ reflections on and perceptions about rural male suicide. Three inductively derived themes, “Missing the signs”, “Living up to his public image” and “Down in Rural Canada ” reflect the challenges that survivors and young rural men can experience in attempting to be comply with restrictive dominant ideals of masculinity. We conclude that community based suicide prevention efforts would benefit from gender-sensitive and place specific approaches to advancing men’s mental health by making tangibly available and affirming an array of masculinities to foster the well-being of young rural based men.

Self and identity in women with symptoms of borderline personality: A qualitative study

Identity disturbance has been suggested to be a core feature of borderline personality disorder (BPD). However, there is little known about the identity of individuals with symptoms of BPD from the participant’s perspective. This study availed of in-depth lightly structured life story interviews with five female participants. Thematic analysis was utilized to derive three themes of identity: connection, distance between us, and hurt and healing. Results provided support for multiple and flexible conceptualizations of identity in comparison to the idea of a unitary self/identity. Results also suggested that participants were able to establish differing connections to others ranging from disconnection to intimacy and care. Participants reported that their identities were impacted upon by historical and current family/relationship dysfunction, but life stories also illustrated the positive impact of healing relationship experiences. Findings provide support for psychological theories that consider a multiple and relational self/identity and the empowerment of healthy aspects of the self in BPD recovery. Studies that assess the association between insight and change may further our knowledge into this complex population.