Improving the management of pain from advanced cancer in the community: study protocol for a pragmatic multicentre randomised controlled trial.

INTRODUCTION: For patients with advanced cancer, research shows that pain is frequent, burdensome and undertreated. Evidence-based approaches to support cancer pain management have been developed but have not been implemented within the context of the UK National Health Service. This protocol is for a pragmatic multicentre randomised controlled trial (RCT) to assess feasibility, acceptability, effectiveness and cost-effectiveness for a multicomponent intervention for pain management in patients with advanced cancer. METHODS AND ANALYSIS: This trial will assess the feasibility of implementation and uptake of evidence-based interventions, developed and piloted as part of the Improving the Management of Pain from Advanced Cancer in the Community Programme grant, into routine clinical practice and determine whether there are potential differences with respect to patient-rated pain, patient pain knowledge and experience, healthcare use, quality of life and cost-effectiveness. 160 patients will receive either the intervention (usual care plus supported self-management) delivered within the oncology clinic and palliative care services by locally assigned community palliative care nurses, consisting of a self-management educational intervention and eHealth intervention for routine pain assessment and monitoring; or usual care. The primary outcomes are to assess implementation and uptake of the interventions, and differences in terms of pain severity. Secondary outcomes include pain interference, participant pain knowledge and experience, and cost-effectiveness. Outcome assessment will be blinded and patient-reported outcome measures collected via post at 6 and 12 weeks following randomisation. ETHICS AND DISSEMINATION: This RCT has the potential to significantly influence National Health Service delivery to community-based patients with pain from advanced cancer. We aim to provide definitive evidence of whether two simple interventions delivered by community palliative care nurse in palliative care that support-self-management are clinically effective and cost-effective additions to standard community palliative care. TRIAL REGISTRATION NUMBER: ISRCTN18281271; Pre-results.

Navigating an unfamiliar world: how parents of young people who self-harm experience support and treatment.

BACKGROUND: Self-harm in young people is a common reason for contact with clinical services. However, there is little research focusing on parents' perspectives of care following self-harm. The aim of this study was to explore parents' experiences of treatment and support for the young person and for themselves. METHODS: A qualitative design was used to explore parents' perspectives. Semi-structured narrative interviews were conducted across the UK with 37 parents of young people who had self-harmed. Thematic analysis was undertaken to identify themes relating to how parents experienced the help and treatment received. RESULTS: Parents reported differing reactions to contact with helping services. Many found these helpful, particularly in keeping the young person safe, developing a trusting relationship with the young person, encouraging skills in managing self-harm and giving them an opportunity to talk about and find solutions to their difficulties. They spoke about the importance of practical help including prompt access to care, the right intensity of care, practical strategies and information and support. Some aspects of services were perceived as unhelpful, particularly a judgmental approach by professionals, lack of early access to treatment, inadequate support or failure to listen to the perspective of parents. CONCLUSIONS: Parents' views highlight the need for clinicians to consider carefully the perspective of parents, involving them wherever possible and providing practical help and support, including written information. The need for training of clinicians in communicating with young people and parents following self-harm is also highlighted.

Making Sense of an Unknown Terrain: How Parents Understand Self-Harm in Young People.

Self-harm is common in young people, and can have profound effects on parents and other family members. We conducted narrative interviews with 41 parents and other family members of 38 young people, aged up to 25, who had self-harmed. Most of the participants were parents but included one sibling and one spouse. This article reports experiences of the parent participants. A cross-case thematic analysis showed that most participants were bewildered by self-harm. The disruption to their worldview brought about by self-harm prompted many to undergo a process of "sense-making"-by ruminative introspection, looking for information, and building a new way of seeing-to understand and come to terms with self-harm. Most participants appeared to have been successful in making sense of self-harm, though not without considerable effort and emotional struggle. Our findings provide grounds for a deeper socio-cultural understanding of the impact of self-harm on parents.

Supporting self-management of pain by patients with advanced cancer: views of palliative care professionals.

PURPOSE: The aim of the study is to ascertain the views of specialist palliative care professionals on patient self-management of cancer pain in order to inform the development of a new educational intervention to support self-management. METHODS: This is a qualitative research study using focus group interviews. RESULTS: Participants viewed self-management of cancer pain as desirable and achievable but also as something that could be problematic. Challenges to self-management were perceived in patient attitudes and behaviours, professionals' own beliefs and actions and the wider social system. Practitioners showed awareness of potential tension between their espoused views (the desirability that patients manage pain autonomously) and their tacit views (the undesirability of patients managing pain in ways which conflict with professionals' knowledge and identity). CONCLUSIONS: Practitioners espoused patient-centred professional practice which inclined them towards supporting self-management. They showed awareness of factors which might inhibit them from effectively incorporating education and support for self-management into routine practice.

Changes in parenting strategies after a young person's self-harm: a qualitative study.

BACKGROUND: When faced with the discovery of their child's self-harm, mothers and fathers may re-evaluate their parenting strategies. This can include changes to the amount of support they provide their child and changes to the degree to which they control and monitor their child. METHODS: We conducted an in-depth qualitative study with 37 parents of young people who had self-harmed in which we explored how and why their parenting changed after the discovery of self-harm. RESULTS: Early on, parents often found themselves "walking on eggshells" so as not to upset their child, but later they felt more able to take some control. Parents' reactions to the self-harm often depended on how they conceptualised it: as part of adolescence, as a mental health issue or as "naughty behaviour". Parenting of other children in the family could also be affected, with parents worrying about less of their time being available for siblings. Many parents developed specific strategies they felt helped them to be more effective parents, such as learning to avoid blaming themselves or their child for the self-harm and developing new ways to communicate with their child. Parents were generally eager to pass their knowledge on to other people in the same situation. CONCLUSIONS: Parents reported changes in their parenting behaviours after the discovery of a child's self-harm. Professionals involved in the care of young people who self-harm might use this information in supporting and advising parents.

The impact of self-harm by young people on parents and families: a qualitative study.

OBJECTIVES: Little research has explored the full extent of the impact of self-harm on the family. This study aimed to explore the emotional, physical and practical effects of a young person's self-harm on parents and family. DESIGN AND PARTICIPANTS: We used qualitative methods to explore the emotional, physical and practical effects of a young person's self-harm on their parents and family. We conducted a thematic analysis of thirty-seven semistructured narrative interviews with parents of young people who had self-harmed. RESULTS: After the discovery of self-harm, parents described initial feelings of shock, anger and disbelief. Later reactions included stress, anxiety, feelings of guilt and in some cases the onset or worsening of clinical depression. Social isolation was reported, as parents withdrew from social contact due to the perceived stigma associated with self-harm. Parents also described significant impacts on siblings, ranging from upset and stress to feelings of responsibility and worries about stigma at school. Siblings had mixed responses, but were often supportive. Practically speaking, parents found the necessity of being available to their child often conflicted with the demands of full-time work. This, along with costs of, for example, travel and private care, affected family finances. However, parents generally viewed the future as positive and hoped that with help, their child would develop better coping mechanisms. CONCLUSIONS: Self-harm by young people has major impacts on parents and other family members. Clinicians and staff who work with young people who self-harm should be sensitive to these issues and offer appropriate support and guidance for families.