Health of mothers of children with a life-limiting condition: a comparative cohort study.

OBJECTIVE: This study aimed to quantify the incidence rates of common mental and physical health conditions in mothers of children with a life-limiting condition. METHODS: Comparative national longitudinal cohort study using linked primary and secondary care data from the Clinical Practice Research Datalink in England. Maternal-child dyads were identified in these data. Maternal physical and mental health outcomes were identified in the primary and secondary care datasets using previously developed diagnostic coding frameworks. Incidence rates of the outcomes were modelled using Poisson regression, adjusting for deprivation, ethnicity and age and accounting for time at risk. RESULTS: A total of 35 683 mothers; 8950 had a child with a life-limiting condition, 8868 had a child with a chronic condition and 17 865 had a child with no long-term condition.The adjusted incidence rates of all of the physical and mental health conditions were significantly higher in the mothers of children with a life-limiting condition when compared with those mothers with a child with no long-term condition (eg, depression: incidence rate ratio (IRR) 1.21, 95% CI 1.13 to 1.30; cardiovascular disease: IRR 1.73, 95% CI 1.27 to 2.36; death in mothers: IRR 1.59, 95% CI 1.16 to 2.18). CONCLUSION: This study clearly demonstrates the higher incidence rates of common and serious physical and mental health problems and death in mothers of children with a life-limiting condition. Further research is required to understand how best to support these mothers, but healthcare providers should consider how they can target this population to provide preventative and treatment services.

Consulting with young people: informing guidelines for children's palliative care.

OBJECTIVE: Increasingly the views of young people are sought when improving healthcare; however, it is unclear how they shape policy or practice. This paper presents a consultation with young people commissioned by the National Institute for Health and Care Excellence (NICE) to inform clinical guidelines for paediatric palliative care (end-of-life care for infants, children and young people). METHODS: The consultation involved qualitative thematic analysis of data from 14 young people (aged 12-18 years) with a life-limiting or life-threatening condition who took part in focus groups or interviews. The topics explored were predefined by NICE: information and communication; care planning; place of care; and psychological care. Data collection consisted of discussion points and activities using visual cues and was informed by a pilot consultation group with five young adults (aged 19-24 years). Findings were shared with participants, and feedback helped to interpret the findings. RESULTS: Four overarching themes were identified, cutting across the predetermined topic areas: being treated as individuals with individual needs and preferences; quality of care more important than place; emotional well-being; and living as a young person. Importantly, care planning was viewed as a tool to support living well and facilitate good care, and the young people were concerned less about where care happens but who provides this. CONCLUSION: Young people's priorities differ from those of parents and other involved adults. Incorporating their priorities within policy and practice can help to ensure their needs and preferences are met and relevant research topics identified.

Fifteen-minute consultation: Not the whole story-considering children's spirituality and advance care planning.

In a society of diverse views, faiths and beliefs, what can paediatric palliative care contribute to our understanding of children's spirituality? By failing to recognise and respond to their spirituality in this work, we risk missing something of profound importance to children and their families. We overlook their search for wholeness in the absence of cure and fall short of offering truly holistic care. This paper explores how developments in advance care planning and related documentation are addressing these issues. Since children's spirituality is elusive and rarely explored in practice, it aims to clarify our understanding of it with a variety of examples and contains suggestions for hearing the voice of the child amid the needs of parents and professionals.

Exploring the rewards and challenges of paediatric palliative care work - a qualitative study of a multi-disciplinary children's hospice care team.

BACKGROUND: Children's hospices are a key provider of palliative care for children and young people with life-limiting and life-threatening conditions. However, despite recent policy attention to the provision of paediatric palliative care, little is known about the role of children's hospice staff and the factors that may impact on their wellbeing at work. This study explored the rewards and challenges of working in a children's hospice with an aim to identify staff support and development needs. METHODS: We conducted an exploratory, qualitative study involving thematic analysis of semi-structured interviews with 34 staff and three focus groups with 17 staff working in a multi-disciplinary care team in a UK children's hospice. RESULTS: Participants identified rewards and challenges related to the direct work of caring for children and their families; team dynamics and organisational structures; and individual resilience and job motivation. Participants described the work as emotionally intensive and multi-faceted; 'getting it right' for children was identified as a strong motivator and reward, but also a potential stressor as staff strived to maintain high standards of personalised and emotional care. Other factors were identified as both a reward and stressor, including team functioning, the allocation of work, meeting parent expectations, and the hospice environment. Many participants identified training needs for different aspects of the role to help them feel more confident and competent. Participants also expressed concerns about work-related stress, both for themselves and for colleagues, but felt unable to discuss this at work. Informal support from colleagues and group clinical reflection were identified as primary resources to reflect on and learn from work and for emotional support. However, opportunities for this were limited. CONCLUSIONS: Providing regular, structured, and dedicated clinical reflection provides a mechanism through which children's hospice staff can come together for support and learning, and demonstrates an organisational commitment to staff wellbeing and development. Being aware of children's hospice specific rewards and challenges can help to ensure that staff feel supported and competent in their role. Breaking down barriers to discussing work-related stress and enhancing awareness about early signs of burnout is also important.

Patterns of diagnoses among children and young adults with life-limiting conditions: A secondary analysis of a national dataset.

BACKGROUND: Numbers of children and young people with life-limiting conditions are rising, and increasing lifespans require young adults with life-limiting condition to transit to appropriate adult services. AIM: To describe the prevalence of life-limiting condition in children and young adults by age, sex, diagnostic group, ethnicity and deprivation. DESIGN: A secondary analysis of the English Hospital Episode Statistics dataset was undertaken to calculate prevalence per 10,000 population. SETTING/PARTICIPANTS: Individuals (0-40 years) with life-limiting conditions were identified within an English Hospital Episode Statistics dataset by applying a customised coding framework of International Classification of Diseases, 10th Edition, disease codes. RESULTS: There were 462,962 inpatient hospital admissions for 92,129 individual patients with a life-limiting condition. Prevalence-by-age group curve is U shaped with the highest overall prevalence in the under 1-year age group (127.3 per 10,000), decreasing until age 21-25 years (21.1 per 10,000) before rising steeply to reach 55.5 per 10,000 in the 36-40 -year age group. The distribution by diagnostic group varies by age: congenital anomalies are most prevalent in children until age 16-20 years with oncology diagnoses then becoming the most prevalent. CONCLUSION: Non-malignant diagnoses are common in children and young adults, and services that have historically focussed on oncological care will need to widen their remit to serve this population of life-limited patients. The diagnosis determining a patient's life-limiting condition will strongly influence their palliative care service needs. Therefore, understanding the diagnostic and demographic breakdown of this population of teenagers and young adults is crucial for planning future service provision.

Paediatric life-limiting conditions: coping and adjustment in siblings.

A total of 31 siblings, aged between 5 and 16 years, of children with a life-limiting condition, participated in a longitudinal, mixed method study. Data collection included standardised psychometric measures and visual and participatory qualitative methods. Emotional functioning and perceptions of self-worth were normative on standardised measures. Qualitative data indicated distinct psychosocial strategies that appeared to underpin functioning, positioning themselves as adults within the family, adopting a role of 'social glue' in key relationships and thereby diminishing their own needs, and compartmentalising home and school life. Some strategies appeared adaptive in the short term but may be limiting in the longer term. The implications for professionals working to support families are discussed.

Rising national prevalence of life-limiting conditions in children in England.

BACKGROUND: Life-limiting conditions (LLCs) describe diseases with no reasonable hope of cure that will ultimately be fatal. For children with these diseases, palliative care services should be available but few data are available to estimate the burden of these conditions. METHODS: Children (0-19 years) with LLCs were identified within an English Hospital Episode Statistics dataset (2000/2001-2009/2010) by applying a customized coding framework of the International Classification of Diseases, 10th Revision, disease codes. Prevalence per 10 000 population (0-19 years) was calculated by age, diagnostic group, ethnicity, deprivation, and region for each year. RESULTS: The Hospital Episode Statistics extract contained 175 286 individuals with 1 or more LLCs of which congenital anomalies were the most common (31%). Prevalence increased over 10 years from 25 to 32 per 10 000 population. Prevalence in the South Asian (48 per 10 000); black (42 per 10 000); and Chinese, mixed, and "other" (31 per 10 000) populations were statistically significantly higher compared with the white population (27 per 10 000). Prevalence shows an inverse J-shaped relationship with 5 categories of deprivation, with the highest prevalence in the most deprived areas and the lowest in the second least deprived. CONCLUSIONS: In 2010, the prevalence of LLCs in children in England was double the previously reported estimates and had increased annually in all areas over the past decade. This clearly identifies an escalating need for specialist pediatric palliative care services. When planning services for these increasing needs, the excess prevalence in ethnic minority groups, especially in deprived areas, needs to be considered.

A cohort study of children and young people with progressive neuromuscular disorders: clinical and demographic profiles and changing patterns of referral for palliative care.

BACKGROUND: Progressive neuromuscular disease in children is life limiting and these children and young people would benefit from palliative care services, but data are limited on the number and demography of these children. AIM: To describe the clinical and demographic profile of children referred to a Children's hospice in the UK with progressive neuromuscular disease. SETTING/PARTICIPANTS: All children and young people with progressive neuromuscular disorders referred to Martin House Children's Hospice between 1987 and 2010. DESIGN: Retrospective cohort study. RESULTS: 300 children with progressive neuromuscular disease were referred to the hospice. Seventy percent (210) of these children had Duchenne Muscular Dystrophy, 22% (67) had Spinal Muscular Atrophy (34 with Type I) and 8% had other neuromuscular diseases. Numbers of referrals have not significantly increased over the last 15 years, although an increasing number come from a South Asian background (from 4% to 32%) and a higher number of children have conditions other than Duchenne Muscular Dystrophy. A total of 55.3% (166) of all referrals came from areas of the highest deprivation. Survival patterns varied by diagnostic group, but ethnicity and deprivation were not associated with survival in these children. CONCLUSIONS: The profile of children with progressive neuromuscular conditions who were referred for palliative care has changed over the last 20 years, with a different spectrum of underlying diagnoses and a greater number from a South Asian background. The higher than expected proportion of children living in areas of high deprivation has been consistent over time.

Using a human figure drawing to elicit information from alleged victims of child sexual abuse.

Ninety 4- to 13-year-old alleged victims of sexual abuse were interviewed by police officers using the National Institute of Child Health and Human Development (NICHD) investigative interview protocol, following which they were shown a human figure drawing and asked a series of questions. The drawing and associated questions elicited an average of 86 new forensically relevant details. They were especially productive with 4- to 7-year-olds, who provided an average of 95 additional details (27% of their total) after the drawing was introduced despite having previously "exhausted" their memories. Information elicited using the drawing may be less accurate, however, because recognition memory prompts predominated, so such drawings should only be introduced late in investigative interviews.

Personal constructs, childhood sexual abuse and revictimization.

Within the theoretical framework of Ryle's Procedural Sequence Object Relations Model and Kelly's Personal Construct Theory, this study investigates sex-role polarization of incest survivors and the centrality of abuse within survivors' constructs of men that may contribute to revictimization. Repertory grid methodology was used with 40 female survivors of childhood sexual abuse and 28 non-abused women. Grid measures and psychometric measures were compared between groups of women who had and had not experienced childhood sexual abuse, revictimized and non-revictimized survivors, and survivors who had and had not experienced incestuous abuse. Results showed significant differences between survivors and non-abused women, with survivors having higher levels of depression and perceived distress, lower self-esteem and higher self/ideal self discrepancy. Hypothesized differences in sex-role polarization were not found. There were few differences between revictimized and non-revictimized survivors, although revictimized survivors rated 'self now' as more powerful than non-revictimized survivors. No differences were found between survivors who had and had not experienced incestuous abuse. In addition to the value of exploring personal constructs, a range of models need to be considered in understanding revictimization and women's construal of men. The implications of using repertory grid methodology for research and clinical work are discussed.