1,721,108 research outputs found
Caregivers’ perspectives on the social and physical environmental factors associated with the play of their children with palliative care needs: A Q methodology study
No full textChildren living with palliative care needs are less engaged in play, despite its importance in their lives. The environment may have a crucial role in supporting these children’s play. Understanding the importance and impact of environmental factors on children’s play is essential to being able to support their participation in play. Data were collected from caregivers (mostly parents) of children living with life-threatening/limiting conditions, who were between 5-11 years old. Thirty-nine participants were recruited from two children hospitals and two hospices in Kuwait and in the UK. The participants’ perspectives were explored using Q methodology. By-person factor analysis was used to explore the ranking of each statement. Content analysis was used to analyse the participants’ verbal comments. The most important environmental factors were the need for others to share play and get assistance to facilitate play. However, this is not always possible as these conditions, the life-threatening/limiting conditions may be socially isolating. Children also experience limitations in accessing play resources that match their abilities and meet their play needs. Being aware and responsive to children’s play needs is essential for building appropriately supportive play environments for children living with life threatening / life limiting conditions.<br/
Parents' perspectives on conflict in paediatric healthcare: a scoping review
No full textBackground Conflict in paediatric healthcare is becoming increasingly prevalent, in particular relation to paediatric end of life. This is damaging to patients, families, professionals and healthcare resources. Current research has begun to explore perspectives of healthcare professionals (HCPs), but the parental views on conflict are lacking. Objectives This scoping review explores parental views on conflict during a child's end of life. In addition, parental views are mapped onto HCPs' views. Methods A search was completed of the databases CINAHL, PubMed, Web of Science, Embase and Medline between 1997 and 2019, focused on parents of children with involvement with palliative or end-of-life care referring to conflict or disagreements. Results The review found 10 papers that included parental views on conflict. Data on conflict were categorised into the following seven themes: communication breakdown, trust, suffering, different understanding of 'best interest', disagreements over treatment, spirituality and types of decision-making. In particular, parental expertise, perspectives on suffering and ways of making decisions were significant themes. A subset of themes mirror those of HCPs. However, parents identified views of conflict unique to their perspective. Conclusions Parents identified important themes, in particular their perspective of what constitutes suffering and 'est interest'. In addition, parents highlight the importance of being recognised as an expert.</p
Parent values and preferences underpinning treatment decision-making in poor-prognosis childhood cancer: a scoping review protocol
Full text linkIntroduction Parents of a child with cancer want to be involved in making treatment decisions for their child. Underpinning and informing these decisions are parents' individual values and preferences. Parents of a child who has a poor prognosis cancer and who subsequently dies can experience decisional regret. To support parents, and potentially reduce decisional regret, identifying the values and preferences of parents who are making these treatment decisions may enhance the support that can be provided by healthcare professionals. An increased understanding will support future work in this area and identify research gaps that could strengthen support strategies in clinical practice. The aim of this scoping review is to explore parent values and preferences underpinning treatment decision making when their child is receiving cancer-directed therapy for a poor prognosis cancer. Methods and analysis The Joanna Briggs Institute scoping review methodology will be followed. An initial database search of CINHAL and MEDLINE will be conducted to analyse the keywords using subject headings and Medical Subject Headings terms. Articles will be initially screened on title and abstract. The reference and citation lists of the full-text articles to be included will be searched using Web of Science. Articles will be independently reviewed by two reviewers and any discrepancies discussed with a third reviewer. Data extracted will be presented in tabular, diagrams and descriptive summaries. Ethics and dissemination Ethical approval is not required for this scoping review. This review will inform further research with parents to understand their values and preferences when making repeated treatment decisions when their child has a poor prognosis cancer. All outputs will be disseminated through peer-reviewed publications and conference presentations. This scoping review is registered on the Open Science Framework (https://osf.io/n7j9f).</p
This is not part of my life plan’: a qualitative study on the psychosocial experiences and practical challenges in young adults with cancer age 25 to 39 years at diagnosis
No full textObjective: Adolescents and young adults with cancer face unique psychosocial and practical issues. However, patients across this group encounter different life experiences, cancer diagnoses and treatment settings given the tailored services for patients ages 15 to 24. Here, we qualitatively explore the psychosocial experiences and practical challenges of young adults (YAs) with cancer diagnosed between ages 25 and 39 in the United Kingdom. Methods: We invited YAs diagnosed with cancer in the 5 years prior to enrolment at participating sites to take part in semi-structured interviews or focus groups. Transcripts were analysed using inductive thematic analysis. Two YA patients reviewed the results to ensure robustness. Results: Sixty-five YAs with varied diagnoses participated. Participants struggled to balance work, childcare and financial solvency with treatment. The halt in family and work life as well as changes in image and ability threatened participants’ identity and perceived ‘normality’ as a YA, however, these also stimulated positive changes. YAs experienced social isolation from friends and family, including children. Many struggled to cope with uncertainty around treatment outcomes and disease recurrence. Conclusion: The disruption of family and work life can lead to age-specific issues in YAs diagnosed with cancer. Age-tailored psychological and practical services must be considered.</p
COVID-19: experiences and support needs of children and young people with Hydrocephalus and parents in the United Kingdom
No full textPurpose: Little is known about the impact of COVID-19 on children and young people (CYP) with hydrocephalus and their families. This study explored the experiences and support needs of CYP with hydrocephalus and parents who have a child with hydrocephalus during the COVID-19 pandemic. Methods: CYP with hydrocephalus and parents of CYP with hydrocephalus in the United Kingdom completed an online survey with open and closed questions exploring experiences, information, support needs and decision making processes. Qualitative thematic content analysis and descriptive quantitative analyses were undertaken. Results: CYP aged 12-32 years (n=25) and parents of CYP aged 0-20 years (n=69) responded. Parents (63.5%) and CYP (40.9%) worried about the virus, and both were vigilant for virus symptoms (86.5% and 57.1%). Parents (71.2%) and CYP (59.1%) worried about their child/feeling more isolated during the virus outbreak. Parents felt concerned about having to take their child to hospital with a suspected shunt problem during the virus outbreak (64.0%). Qualitative findings reported the following themes: (1) Healthcare and treatment provision: delays and challenges to access and availability of care (2) Impact of COVID-19/lockdown on daily lives and routines, and (3) Provision of information and support for parents and CYP with hydrocephalus. Conclusion: The impact of COVID-19 and national measures to control the spread of the virus- no contact with anyone outside the household significantly impacted the daily lives and routines of CYP with hydrocephalus and parents. Social engagements were missed, families faced challenges to their work life, education and access to health care and support, which subsequently contributed negatively to their mental wellbeing. CYP and parents highlighted a need for clear, timely and targeted information to address their concerns.</p
An investigation about transferring patients in critical care home to die: experiences, attitudes, population characteristics and practice. Executive summary of final report
No full textA systematic review and thematic synthesis of quality of life in the informal carers of cancer patients with cachexia
No full textBackground: informal carers of cancer patients with cachexia face additional challenges to those encountered by informal carers in general because of the central role food and eating play in everyday life. Patient weight loss and anorexia, core features of cancer cachexia, are frequent causes of distress in caregivers. Identification of quality of life (QOL) issues can inform the development of interventions for both caregivers and patients, and facilitate communication with healthcare professionals (HCPs).Aim: to identify QOL issues that are relevant to carers of cancer patients with cachexia. Design: A systematic review and thematic synthesis of the qualitative literature were conducted. Reporting followed the PRISMA guidelines.Data sources: PubMed, ISI web of knowledge, EMBASE, Medline, CINAHL, PsychINFO, and PsycARTICLES were searched for publications dated from January 1980 to June 2013 using search terms relating to cancer, cachexia, QOL and carers. Papers written in the English language, featuring direct quotes from the carers of adult patients with any cancer diagnosis and cachexia or problems with weight loss or anorexia were included. Results: five themes were extracted from the sixteen identified studies. These highlighted the impact on everyday life, the attempts of some carers to take charge, the need for HCP input, conflict with the patient and negative emotions. Conclusions: the complexity of caring for a cancer patient with cachexia translates into a range of problems and experiences for informal carers. By addressing the impact of caring for a patient with cancer cachexia on carers, both caregiver and patient QOL may improve<br/
Developing the methods and questionnaire (VOICES-SF) for a national retrospective mortality follow-back survey of palliative and end of life care in England
No full textThe National Survey of Bereaved People was conducted by the Office for National Statistics on behalf of NHS England for the first time in 2011, and repeated annually thereafter. It is thought to be the first time that nationally representative data have been collected annually on the experiences of all people who have died, regardless of cause and setting, and made publicly available informing palliative and end-of-life policy, service provision and development, and practice. This paper describes the development of the questionnaire used in the survey, VOICES-SF, a short-form of the VOICES (Views Of Informal Carers—Evaluation of Services) questionnaire, adapted specifically to address the aims of the national survey. The pilot study to refine methods for the national survey is also described. The paper also reports on the development of the retrospective, after-death or mortality follow-back method in palliative and end-of-life care, and reviews its strengths and weaknesses
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