How do children’s nurses working in hospices manage emotional labour and professional integrity in long-term relationships with parents?
Parents; child; female; human; male; ethics; Hospices; emotion; clinical article; hospice; mobile phone; human experiment; nurse; human tissue; thematic analysis; conference abstract; coping behavior; theoretical study; social media; telephone interview; nursing practice; emotional intelligence; professionalism; purposive sample
Background Children with life-limiting conditions are living longer, so relationships between nurses and families can span decades (Maunder 2013)2. Although long-term relationships between nurses and children/families in paediatric palliative care have been researched, studies undertaken exclusively in children's hospices (CH) are rare. Aims Develop an understanding of how CH nurses maintain professional integrity whilst providing long-term practical, emotional, social and spiritual care to parents. Explore coping strategies used by CH nurses to manage emotional labour. Methods Participants were a purposive sample of six registered children's nurses, employed at CH for minimum of 4 years. Participants told the story of a shift, focusing on interactions with parents. Data collected (January 2019-January 2020) via audio diaries recorded on mobile phones and further explored in telephone interviews. Audio diaries securely transmitted via 'Whatsapp' (university and hospice ethics approval granted). Results Thematic analysis (Braun and Clarke 2006)1 was used to identify that participants used a range of strategies/ approaches to manage their relationship with parents; in terms of their emotions (Purposeful positioning) and interactions (Balancing personability and professionalism). In addition, participants revealed other CH specific factors which helped them cope with their role (Coping with and counterbalancing emotional labour). Discussion Findings were indicative of CH nurses' using and building Emotional Intelligence (EI). Established EI theory was combined with findings to develop: ENRiCHn (Using EI to Navigate Relationships in Children's Hospices: a framework for nurses). Although CH specific, aspects of the framework could be adapted for other areas of nursing practice where long-term nurse-parent/client relationships exist. Conclusions The findings provided an insight into how experienced CH nurses used emotional intelligence to engage emotionally with parents whilst simultaneously managing the level of involvement and maintaining a sense of separation. Features of hospice work which positively contributed to counterbalancing the emotional demands of the role were also highlighted.
Brimble MJ
BMJ Supportive and Palliative Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/spcare-2023-PCC.52" target="_blank" rel="noreferrer noopener">10.1136/spcare-2023-PCC.52</a>
Assessment of a Mobile App by Adolescents and Young Adults With Cystic Fibrosis: Pilot Evaluation
Adolescence; adolescent; adult; anthropometry; article; breathing; child; chronic lung disease; clinical article; controlled study; cystic fibrosis; disability; female; human; life expectancy; life satisfaction; lung function; male; mobile application; mobile phone; quality of life; questionnaire; responsibility; self care; young adult
BACKGROUND: Cystic fibrosis (CF) continues to be the most common life-limiting chronic pulmonary disease in adolescents and young adults. Treatment of CF demands a high treatment time investment to slow the progression of lung function decline, the most important contributor to morbidity and mortality. Adherence is challenging in CF due to the high treatment burden and the lack of immediate health consequences in case of nonadherence. Lung function decline is particularly pronounced in the transition phase between 12 and 24 years of age. The improvement of self-management and self-responsibility and independence from parents and desire for normalcy are conflicting aspects for many adolescents with CF, which influence adherence to the time-consuming pulmonary therapy. Mobile health (mHealth) care apps could help to support self-management and independence and thereby reconcile seemingly conflicting goals to improve adherence, quality of life, and ultimately CF life expectancy.
Rudolf I; Pieper K; Nolte H; Junge S; Dopfer C; Sauer-Heilborn A; Ringshausen F C; Tummler B; von Jan U; Albrecht U V; Fuge J; Hansen G; Dittrich A M
JMIR mHealth and uHealth
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.2196/12442" target="_blank" rel="noreferrer noopener">10.2196/12442</a>
Facebook Advertisements Recruit Parents of Children With Cancer for an Online Survey of Web-Based Research Preferences
Child; Female; Male; Income; adolescent; Human; oncology; Diseases; Sample Size; Population; Article; Child; Caregiver; advertizing; cancer research; Caregiver; childhood cancer; Human; Internet; neoplasm; parent; social media; social network; cancer palliative therapy; cancer patient; cancer recurrence; click; computer; Facebook; health survey; information processing; interpersonal communication; legal guardian; major clinical study; mobile phone; nurse; Only Child; Palliative therapy; parent; parental attitude; participant recruitment; Patient; priority journal; school child; social media; Video Recording; Video Recording
BACKGROUND:: Studies involving samples of children with life-threatening illnesses and their families face significant challenges, including inadequate sample sizes and limited diversity. Social media recruitment and Web-based research methods may help address such challenges yet have not been explored in pediatric cancer populations. OBJECTIVE:: This study examined the feasibility of using Facebook advertisements to recruit parent caregivers of children and teenagers with cancer. We also explored the feasibility of Web-based video recording in pediatric palliative care populations by surveying parents of children with cancer regarding (a) their preferences for research methods and (b) technological capabilities of their computers and phones. METHODS:: Facebook's paid advertising program was used to recruit parent caregivers of children currently living with cancer to complete an electronic survey about research preferences and technological capabilities. RESULTS:: The advertising campaign generated 3 897 981 impressions, which resulted in 1050 clicks at a total cost of $1129.88. Of 284 screened individuals, 106 were eligible. Forty-five caregivers of children with cancer completed the entire electronic survey. Parents preferred and had technological capabilities for Web-based and electronic research methods. Participant survey responses are reported. CONCLUSION:: Facebook was a useful, cost-effective method to recruit a diverse sample of parent caregivers of children with cancer. Web-based video recording and data collection may be feasible and desirable in samples of children with cancer and their families. IMPLICATIONS FOR PRACTICE:: Web-based methods (eg, Facebook, Skype) may enhance communication and access between nurses and pediatric oncology patients and their families.
2014-06
Akard TF; Wray S; Gilmer Mary Jo
Cancer Nursing
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/NCC.0000000000000146" target="_blank" rel="noreferrer">10.1097/NCC.0000000000000146</a>