Progressive Neuromuscular Diseases (PNDs) are relentless, debilitating, incurable diseases that cause nerves and muscles to atrophy. A large portion of the population who experience PNDs are adolescents. These adolescents progressively lose physical abilities and increasingly rely on caregivers at a time in their life when, paradoxically, normative adolescent development prescribes a move towards independence and autonomy. There is little research examining this experience from the adolescents’ perspectives. The purpose of this interpretive phenomenology study was to understand the experience of adolescents with PNDs when making decisions in relation to their health. Data collection consisted of 10 semi-structured interviews with 5 adolescents, 16-19 years of age, who were living with a PND (two interviews with each of the 5 participants). These interviews lasted an average of 60 minutes. Data were analysed using interpretive strategies, including the development of themes using exemplars, and paradigm cases. Findings revealed that the adolescents separated health decisions into two distinct categories, Big and Small, based upon level of perceived risk and physician involvement. Big referred to high-risk decisions, included physicians, and involved a medical/surgical procedure or intervention. Small referred to lower risk decisions, did not include physicians, and involved personal care. An expert emerged with each category of decision. In Big Decisions, the physician was perceived as the expert who made recommendations, provided information, and introduced the decision. In Small Decisions, the adolescent perceived himself as the expert. With Big Decisions, the physician expertise was typically respected, and the recommendations were followed. With Small Decisions, parents typically respected adolescent expertise. However, the adolescents commonly experienced not having their expertise respected by health professionals. In the context of Big and Small decisions, the theme Joint Ownership captured the sense that with the progressive loss of abilities and resulting dependence, the physical disability and illness were not experienced solely by the adolescent but by the adolescent and his parent(s). As the parent(s) and adolescent shared these experiences, the decisions, ownership of the physical body, and the responsibility for the care of the body also became shared. The findings suggest that health care professionals need to include the adolescents in the Small Decisions, and also acknowledge that adolescents may desire parental involvement in Big Decisions.

Progressive Neuromuscular Diseases (PNDs) are relentless, debilitating, incurable diseases that cause nerves and muscles to atrophy. A large portion of the population who experience PNDs are adolescents. These adolescents progressively lose physical abilities and increasingly rely on caregivers at a time in their life when, paradoxically, normative adolescent development prescribes a move towards independence and autonomy. There is little research examining this experience from the adolescents’ perspectives. The purpose of this interpretive phenomenology study was to understand the experience of adolescents with PNDs when making decisions in relation to their health. Data collection consisted of 10 semi-structured interviews with 5 adolescents, 16-19 years of age, who were living with a PND (two interviews with each of the 5 participants). These interviews lasted an average of 60 minutes. Data were analysed using interpretive strategies, including the development of themes using exemplars, and paradigm cases. Findings revealed that the adolescents separated health decisions into two distinct categories, Big and Small, based upon level of perceived risk and physician involvement. Big referred to high-risk decisions, included physicians, and involved a medical/surgical procedure or intervention. Small referred to lower risk decisions, did not include physicians, and involved personal care. An expert emerged with each category of decision. In Big Decisions, the physician was perceived as the expert who made recommendations, provided information, and introduced the decision. In Small Decisions, the adolescent perceived himself as the expert. With Big Decisions, the physician expertise was typically respected, and the recommendations were followed. With Small Decisions, parents typically respected adolescent expertise. However, the adolescents commonly experienced not having their expertise respected by health professionals. In the context of Big and Small decisions, the theme Joint Ownership captured the sense that with the progressive loss of abilities and resulting dependence, the physical disability and illness were not experienced solely by the adolescent but by the adolescent and his parent(s). As the parent(s) and adolescent shared these experiences, the decisions, ownership of the physical body, and the responsibility for the care of the body also became shared. The findings suggest that health care professionals need to include the adolescents in the Small Decisions, and also acknowledge that adolescents may desire parental involvement in Big Decisions.

Progressive Neuromuscular Diseases (PNDs) are relentless, debilitating, incurable diseases that cause nerves and muscles to atrophy. A large portion of the population who experience PNDs are adolescents. These adolescents progressively lose physical abilities and increasingly rely on caregivers at a time in their life when, paradoxically, normative adolescent development prescribes a move towards independence and autonomy. There is little research examining this experience from the adolescents’ perspectives. The purpose of this interpretive phenomenology study was to understand the experience of adolescents with PNDs when making decisions in relation to their health. Data collection consisted of 10 semi-structured interviews with 5 adolescents, 16-19 years of age, who were living with a PND (two interviews with each of the 5 participants). These interviews lasted an average of 60 minutes. Data were analysed using interpretive strategies, including the development of themes using exemplars, and paradigm cases. Findings revealed that the adolescents separated health decisions into two distinct categories, Big and Small, based upon level of perceived risk and physician involvement. Big referred to high-risk decisions, included physicians, and involved a medical/surgical procedure or intervention. Small referred to lower risk decisions, did not include physicians, and involved personal care. An expert emerged with each category of decision. In Big Decisions, the physician was perceived as the expert who made recommendations, provided information, and introduced the decision. In Small Decisions, the adolescent perceived himself as the expert. With Big Decisions, the physician expertise was typically respected, and the recommendations were followed. With Small Decisions, parents typically respected adolescent expertise. However, the adolescents commonly experienced not having their expertise respected by health professionals. In the context of Big and Small decisions, the theme Joint Ownership captured the sense that with the progressive loss of abilities and resulting dependence, the physical disability and illness were not experienced solely by the adolescent but by the adolescent and his parent(s). As the parent(s) and adolescent shared these experiences, the decisions, ownership of the physical body, and the responsibility for the care of the body also became shared. The findings suggest that health care professionals need to include the adolescents in the Small Decisions, and also acknowledge that adolescents may desire parental involvement in Big Decisions. / Applied Science, Faculty of / Nursing, School of / Graduate

Objective: A significant number of children suffer from life-limiting illnesses, with many dying each year in the U.S. Services, beyond standard medical care, aimed at increasing overall quality of life for children with life-limiting illnesses, are greatly needed within and outside of our hospitals. Palliative care is conceptualized as treatment provided to relieve symptoms and improve quality of life. Despite the empirically supported benefits of providing pediatric palliative care, only a small percentage of pediatric patients actually receive these services. Thus, there is a great need for the development and provision of these services. The first aim of the current study was to compare results from Holtz Children’s Hospital (HCH) at the University of Miami with those from Lucile Packard Children's Hospital (LPCH) at Stanford University, where a survey assessing pediatric healthcare providers’ palliative care needs was originally developed. The second aim was the modification and further development of the measure, including an evaluation its psychometric properties. The third aim was to identify the educational and training needs of healthcare providers in providing pediatric palliative care. The fourth aim was to evaluate whether completing the survey improved awareness of a palliative care team. Method: Two hundred and twenty five healthcare providers at HCH completed the Survey on Pediatric Palliative Care for Healthcare Providers (SPPCHP). Participants were diverse with regards to ethnicity/race and profession. Results: Healthcare providers at both hospitals reported feeling inexperienced in similar aspects of delivering palliative care and desired further training and support. The SPPCHP demonstrated strong internal consistency and good construct validity, evidenced in factor analyses. Pediatric healthcare providers at HCH reported only feeling “somewhat” experienced in all aspects of pediatric palliative care and rated families’ inability to accept terminal diagnosis as the top barrier to providing this care; half of healthcare providers reported not receiving adequate support. Although referrals did not increase six months after study completion, awareness at the hospital was improved. Conclusions: Clinical implications include the need for systematic training and support in palliative care for a range of pediatric professionals, with an emphasis on addressing key barriers to care. Given the similarity of the findings at HCH and LPCH, these results appear generalizable to a variety of children’s hospitals.

Bakgrund: Bland barn i Sverige så insjuknar varje år drygt 300 barn och ungdomar mellan 0–18 år av cancer. Den palliativa vården bygger på ett förhållningssätt som syftar på att förbättra livskvalitén för både patienter och familjer som drabbas av problem vid livshotande sjukdomar. Allmänhet i vården ses familjen har stor betydelse i omvårdnaden. Syfte: Syftet med studien var att beskriva föräldrars upplevelse av stöd från sjuksköterskor vid palliativ vård av barn med cancer. Syftet med studien var även att granska de i studien ingående artiklarnas datainsamlingsmetod. Metod: Föreliggande litteraturstudie har en deskriptiv design. Sökstrategin utgick från två databaser PubMed och Cinahl. Sökorden använda var Childhood cancer, parents, experience, support och palliative care. Tio artiklar valdes ut för granskning och bearbetning. Huvudresultat: I resultatet framkom fyra hörnstenar: kommunikation, delaktighet, kontinuitet samt relation, som är en grund för föräldrars upplevelse av stöd. Föräldrars upplevelser av stöd i mötet med vården av deras barn med cancer, kretsar kring vårdpersonalens förhållningssätt. En ärlig och god kommunikation, delaktighet, kontinuitet i vården samt relationen mellan familjen och vårdpersonalen upplevdes som viktigast bland föräldrar. Den metodologiska aspekten som valdes för att granskas i den här studien var datainsamlingsmetoden. Utefter granskning av artiklarnas datainsamlingsmetod har det hittats tre olika datainsamlingsmetoder i de olika artiklarna, semistrukturerade intervjuer, fokusgrupper och enkäter. Slutsatser: Kännedom bland sjuksköterskor och vårdpersonal om föräldrars upplevelse av stöd i mötet med vård av ett cancersjukt barn är viktigt för att kunna bygga upp en öppen, ärlig och mellanmänsklig relation. Kommunikation, delaktighet, kontinuitet och vårdrelationen utgör underlag för att kunna uppnå denna mellanmänskliga relation. / Background: In Sweden, more than 300 children and adolescents aged 0-18 years are affected by cancer each year. Palliative care is based on an approach aimed at improving the quality of life for both patients and their families facing the problems of life threatening diseases. In healthcare in general, the family is considered to be of high value in nursing. Aim: The purpose of this study was to describe parents' experience of support from nurses in palliative care for children with cancer. The purpose of the study was also to examine the data collection method of the articles included in the study. Method: This literature review has a descriptive design. The search strategy was based on two databases, PubMed and Cinahl. The keywords used were Childhood Cancer, parents, experience, support and palliative care. Ten articles were selected for review and processing. Result: Four cornerstones were identified in the results: communication, participation, continuity and relationship, which is the foundation for the parents' perception of support. Parents' perceptions of support in the meeting with the care of their child with cancer, revolves around nursing staff approach. An honest and good communication, participation, continuity of care and the relationship between the family and the caregivers were perceived as most important among parents. The methodological aspect that was selected for examination in this study, was the data collection method In the review of the articles data collection methods, three different methods were found in the various articles, semi-structured interviews, focus groups and surveys. Conclusions: The knowledge among nurses and health professionals about parents' experience of support in the care of a cancer sick child is important, in order to build an open, honest and interpersonal relationship. Communication, participation, continuity and care-relationship is the basis for achieving this interpersonal relationship.

Syfte: Syftet med studien var att beskriva föräldrars upplevelse kring när deras barn befinner sig i det terminala skedet av svår sjukdom eller trauma, och av den palliativa vård de erhåller. Ett ytterligare syfte var att kvalitetsgranska artiklarna utifrån datainsamlingsmetod. Metod: Den föreliggande litteraturstudien har en beskrivande design. Sökningar gjordes i databaserna PubMed och Cinahl med sökorden child, parent, experience, palliative care och death. Tretton artiklar valdes ut och bearbetades. Huvudresultat: Det framkom att föräldrar upplevde att vägen mot att förlora ett barn var en kaosartad och känsloladdad tid. De beskrev förlusten av kontroll, att vägra ge upp hoppet, svårigheterna med beslutsfattandet kring barnet samt vad som utmärker en god förälder i denna svåra tid. Upplevelsen av den pediatriska palliativa vården speglade vårdpersonalens förhållningssätt, där en god omvårdnad enligt föräldrarna handlade om en god kommunikation, kontinuitet i vårdteamet samt relationsskapande. Slutsats: Med vetskapen om vilken tid av känslomässigt kaos och sorg föräldrar upplever då de är på väg att förlora sitt barn, kan sjuksköterskan utveckla ett medmänskligt förhållningssätt gentemot dessa familjer. / Aim: The purpose of the study was to describe parental experiences of when their children are in the terminal stage of severe illness or trauma, and of the palliative care they receive. A further aim was to make a quality review of the articles by their data collection method. Methods: This litterature review has a descriptive design. Litterature searches were made in the databases PubMed and Cinahl, using the search terms child, parent, experience, palliative care and death. Thirteen articles were chosen and processed. Result: The study shows that parents experienced the path towards losing a child as a chaotic and emotional time. They described the loss of control, refusal to give up hope, the difficulties with the decision making process regarding the child and what factors define a good parent in these difficult times. The experience of the pediatric palliative care reflected health care professionals approach, where good care according to the parents includes good communication, continuity within the healthcare team and bond making. Conclusion: With knowledge of what time of emotional chaos and sorrow parents experience when they are about to lose their child, the nurse can develop a charitable approach towards these families.

Parents of seriously ill children are charged with making complicated medical decisions, and many of those decisions are made during their children’s hospitalizations. As medical staff seek to support parents, it is important for them to understand what resources parents are drawing upon for decision-making. This project explored parental decision-making by examining the following research questions: RQ1: What resources do parents draw upon to make medical decisions for their seriously ill children? RQ2: How do parents enact their spiritual or religious frameworks in clinical settings when faced with medical decisions for their seriously ill children? Methods of research included ethnographic observation of a pediatric palliative care team and semi-structured interviews with twenty parents and grandparents of seriously ill children. Analysis of the interview data brought out three main themes: the role of spirituality for parents of seriously ill children, the ways parents perceive spiritual conversations with hospital personnel, and the role of spirituality for parents making difficult decisions. A case study is presented as an exemplar of complex decision-making, and the author offers her personal narratives of parenting a seriously ill child. The author suggests new directions for practitioners based on a constitutive approach to communication in which practitioners and parents work together to build towards an understanding of the child’s illness. The findings from this study contribute to the current understanding of families with seriously ill children and should shape medical education in a way that will benefit the next generation of professional care providers as they seek to meet the needs of children and their families.

Bakgrund Palliativ vård innebär symtomlindring av obotliga tillstånd, som hos barn kan vara bland annat cancersjukdomar eller vissa neurologiska tillstånd. Att få palliativ vård som barn är en rättighet enligt WHO. Barnen upplevde ett behov av att ha sina föräldrar nära. Föräldrarna upplevde att de tappade sin föräldraroll när deras barn vårdades palliativt. Föräldrarna hade olika synpunkter på hur en sjuksköterska som arbetade med barn i palliativ vård borde vara och hur vården skulle bedrivas. Sjuksköterskans uppgift är att symtomlindra och stödja både barn och föräldrar inom en familjecentrerad omvårdnad. Syfte Syftet med denna studie var att beskriva sjuksköterskors upplevelser av palliativ vård av barn på sjukhus. Metod En beskrivande litteraturstudie som identifierat 11 artiklar genom databaserna Medline via PubMed och Cinahl. Dessa artiklar har analyserats och tematiserats till denna litteraturstudie. Resultat Sjuksköterskor upplevde att omvårdnaden bedrevs ojämlikt, till följd av otillräckliga riktlinjer. Det uppstod även etiska dilemman inom den palliativa barnsjukvården, som kunde röra sig om kommunikationsproblem, samt att sjuksköterskor upplevde att en del barn blev övervårdade. Sjuksköterskor upplevde emotionella svårigheter, som på bästa sätt bearbetades via reflektionssamtal. Huvudkategorier som identifierats var Sjuksköterskors upplevelser av förutsättningarna inom palliativ barnsjukvård, etiska dilemman, övervård, känslomässig tyngd, att vårda vid livets slut samt reflektionssamtal. Slutsats Sjuksköterskor upplevde osäkerhet i arbetet med barn i palliativ vård, till följd av bristande riktlinjer, utbildning och kunskap. Det uppstod etiska dilemman i vårdandet, och sjuksköterskorna kunde uppleva emotionella svårigheter, som kunde påverka omvårdnaden. Därför behövde sjuksköterskorna tid för reflektion för att klara av att utföra omvårdnad. / Background The main purpose in palliative care is relieve of symptoms from conditions that’s not curable. For children, these conditions can be cancer or some neurologic diseases. Getting palliative care as a child is a right according to WHO. The children wanted their parents. The parents felt that they lost their parental role when their children were cared for palliatively. The parents had different views on how a nurse in palliative child care should be, and how the care should be conducted. The nurse's task is to relieve symptoms and support both children and parents in a family-centered care. Aim The aim of this study was to describe nurses' experiences with palliative care of children in hospitals. Method A descriptive literature study that identified 11 articles through the databases Medline via PubMed and Cinahl. These articles have been analyzed and thematized for this literature study. Results Nurses felt that nursing was conducted unequally, as a result of inadequate guidelines. There were also ethical dilemmas in palliative child care, which could be about communication problems, and that nurses felt that some children were over-cared for. Nurses experienced emotional difficulties, which were best processed through debriefing. Main categories identified were; The Nurses experience of Prerequisites in Palliative Child Care, Ethical Dilemmas, Over-Care, Emotional Load, At the End of Life and Debriefing. Conclusion Nurses experienced uncertainty in working with children in palliative care, due to lack of guidelines, education and knowledge. Ethical dilemmas arose in the care, and the nurses could experience emotional difficulties that can affect nursing. Therefore, the nurses need time for reflection to be able to perform Nursing of the children.

Bakgrund Palliativ vård innebär symtomlindring av obotliga tillstånd, som hos barn kan vara bland annat cancersjukdomar eller vissa neurologiska tillstånd. Att få palliativ vård som barn är en rättighet enligt WHO. Barnen upplevde ett behov av att ha sina föräldrar nära. Föräldrarna upplevde att de tappade sin föräldraroll när deras barn vårdades palliativt. Föräldrarna hade olika synpunkter på hur en sjuksköterska som arbetade med barn i palliativ vård borde vara och hur vården skulle bedrivas. Sjuksköterskans uppgift är att symtomlindra och stödja både barn och föräldrar inom en familjecentrerad omvårdnad. Syfte Syftet med denna studie var att beskriva sjuksköterskors upplevelser av palliativ vård av barn på sjukhus. Metod En beskrivande litteraturstudie som identifierat 11 artiklar genom databaserna Medline via PubMed och Cinahl. Dessa artiklar har analyserats och tematiserats till denna litteraturstudie. Resultat Sjuksköterskor upplevde att omvårdnaden bedrevs ojämlikt, till följd av otillräckliga riktlinjer. Det uppstod även etiska dilemman inom den palliativa barnsjukvården, som kunde röra sig om kommunikationsproblem, samt att sjuksköterskor upplevde att en del barn blev övervårdade. Sjuksköterskor upplevde emotionella svårigheter, som på bästa sätt bearbetades via reflektionssamtal. Huvudkategorier som identifierats var Sjuksköterskors upplevelser av förutsättningarna inom palliativ barnsjukvård, etiska dilemman, övervård, känslomässig tyngd, att vårda vid livets slut samt reflektionssamtal. Slutsats Sjuksköterskor upplevde osäkerhet i arbetet med barn i palliativ vård, till följd av bristande riktlinjer, utbildning och kunskap. Det uppstod etiska dilemman i vårdandet, och sjuksköterskorna kunde uppleva emotionella svårigheter, som kunde påverka omvårdnaden. Därför behövde sjuksköterskorna tid för reflektion för att klara av att utföra omvårdnad. / Background The main purpose in palliative care is relieve of symptoms from conditions that’s not curable. For children, these conditions can be cancer or some neurologic diseases. Getting palliative care as a child is a right according to WHO. The children wanted their parents. The parents felt that they lost their parental role when their children were cared for palliatively. The parents had different views on how a nurse in palliative child care should be, and how the care should be conducted. The nurse's task is to relieve symptoms and support both children and parents in a family-centered care. Aim The aim of this study was to describe nurses' experiences with palliative care of children in hospitals. Method A descriptive literature study that identified 11 articles through the databases Medline via PubMed and Cinahl. These articles have been analyzed and thematized for this literature study. Results Nurses felt that nursing was conducted unequally, as a result of inadequate guidelines. There were also ethical dilemmas in palliative child care, which could be about communication problems, and that nurses felt that some children were over-cared for. Nurses experienced emotional difficulties, which were best processed through debriefing. Main categories identified were; The Nurses experience of Prerequisites in Palliative Child Care, Ethical Dilemmas, Over-Care, Emotional Load, At the End of Life and Debriefing. Conclusion Nurses experienced uncertainty in working with children in palliative care, due to lack of guidelines, education and knowledge. Ethical dilemmas arose in the care, and the nurses could experience emotional difficulties that can affect nursing. Therefore, the nurses need time for reflection to be able to perform Nursing of the children.

No description available.