Introduction Patients with intestinal failure (IF) develop problems of malabsorption and malnutrition associated with short bowel syndrome (SBS). Home parenteral nutrition (HPN) became available to treat these patients since the 1970s. There is a paucity of qualitative research on patients’ experiences in the UK. The study aim was to generate theory that explains the experiences of adults living with HPN and complex medication regimens. Method The grounded theory methodology was used to explore the experiences and to generate theory about this health intervention. Twelve participants were interviewed. The interviews were recorded and transcribed verbatim. The joint process of data collection and analysis followed the principles of constant comparative approach. Results The core categories of stoma care and HPN treatment were supported by the subcategories of maintaining stoma output, access to toilets, maintaining HPN infusion routine, access to technical help to set up HPN infusion, and general health changes. Strategy used to manage living with loss was demonstrated by the subcategory of maintaining daily activities and social interactions. Discussion The theory of living with loss suggests that patients with a stoma receiving HPN experience the sense of loss at home and in social situations. Opportunities for professional practice development are detailed along with implications for future research. Conclusions The findings resonate with the Kubler-Ross Model of the five stages of grief (Kubler-Ross, 1970). The theory of living with loss was generated by the use of the grounded theory methodology. This study identified opportunities for changes and improvement in clinical practice.

Background: Because we are living longer today, the need for healthcare is increasing. Therefore, the need for care at home also increases, which can be a challenge for the nurse to provide. Teamwork means that those involved in the patients’ care use their competencies to complement each other. Nurses are responsible for care, the leadership role includes sharing knowledge, supervising, and giving colleagues feedback. Aim: The aim was to examine nurses’ experiences of teamwork in care at home. Method: This qualitative based literary study included ten articles, searched, and selected from the databases Cinahl and Pubmed. They were analysed using Friberg’s (2017) five steps model. Results: Lack of communication was an obstacle for cooperation, such as language difficulties, insufficient communication of information between colleagues and problems finding information related to different record systems. Hierarchy, mistrust of each other’s competence and uncertainty about who had the overall responsibility for the patient were other difficulties. Having a pleasant tone while talking, being humble and listening to each other was important. If the doctor was available was seen as positive as well as knowing each other in the team since before. Working alone was challenging and in complex situations nurses were happy to collaborate in pairs. It was desirable to have group reflections and supervision mentoring.  Conclusion: The conclusion was that communication and attitudes towards each other are essential for cooperation. Group reflections and tutoring guidance can increase cohesion and team strength. / Då vi lever allt längre och uppnår högre åldrar, ökar behovet av hälso- och sjukvård. Således ökar även behovet av vård i hemmet. Vård i hemmet gavs under år 2021 till 388 000 personer i Sverige. Teamarbete innebär att de inblandade i patientens vård använder sina kompetenser för att komplettera varandra. Sjuksköterskan är omvårdnadsansvarig, och i ledarrollen ingår att dela med sig av kunskap, samt handleda och ge återkoppling till kollegor. Vård i hemmet kan vara en utmaning för sjuksköterskan att ge. Syftet med denna litteraturstudie var därför att undersöka sjuksköterskors erfarenheter av teamarbete vid vård i hemmet. Metoden som användes var litteraturbaserad studie, där tio vetenskapliga artiklar av kvalitativ ansats analyserades och sammanställdes till ett nytt resultat. Resultatet visade att bristande kommunikation sågs som ett hinder för samarbete. Svårigheterna visade sig i form av språkförbistringar, otillräcklig förmedling av information kollegor sinsemellan, samt svårigheter att ta till sig information på grund av olika journalsystem. Det ansågs viktigt att ha en trevlig ton vid samtal, samt att vara ödmjuk och lyssna till varandra. Maktobalans mellan medlemmarna i teamet, och misstro till varandras kompetens, ledde till en försämrad kommunikation. Det kunde vara otydligt vem som hade det övergripande ansvaret för patienten, vilket också försvårade samarbetet. Att känna varandra sedan tidigare framkom som positivt för samarbetet. Att läkaren fanns tillgänglig när sjuksköterskan behövde råd, samt att alla i teamet var delaktiga kring patienten, ansågs också främjande. Sjuksköterskorna upplevde det som utmanande med ensamarbete, och samarbetade gärna i par när komplexa situationer uppstod. Att vara omvårdnadsansvarig och leda teamet krävde ett stort ansvar. Utveckling i form av gruppreflektioner och mentorskap med handledning var önskvärt. Slutsatser som drogs var att kommunikation är a och o för att samarbetet ska fungera. Även förhållningssätt mot varandra var viktigt, det vill säga att ha en trevlig ton i samtal, att se alla som lika värda och att inte se ner på någons kompetens främjar samarbetet. Genom gemensamma reflektioner och handledning kan samhörigheten ökas och teamet stärkas.

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Background. The consensus among Canadians with regards to end-of-life preferences is that with adequate support the majority prefer to live and die at home. Purpose. To compare quality indicator (QI) rates for home care clients receiving palliative and end-of-life care prior to and after the onset of the COVID-19 pandemic. Methods. A retrospective population-based cohort design was used. Sixteen QIs informed by existing literature and a preliminary set of QIs recently evaluated by a modified Delphi panel were compared. Data were obtained from the over 280-item interRAI PC instrument for Ontario home care clients for two separate cohorts: the pre-COVID (January 14th, 2019 to March 16th, 2020) and COVID cohort (March 17th, 2020 to May 18th, 2021). A propensity score analysis was used to match on 21 covariates, resulting in a sample size of 2479 unique interRAI PC assessments per cohort. Alternative propensity score methods were explored as part of a sensitivity analysis. Results. After matching the pre-COVID and COVID cohorts (using nearest neighbour matching), five of the 16 QIs had statistically-significant differences in the QI rates. The two alternative propensity score methods produced slightly different results with fewer statistically-significant differences between the cohorts. However, in examining the effect sizes, the results of all propensity score methods were found to be not clinically meaningful. High rates of the prevalence of shortness of breath with activity, no advance directives, and fatigue were observed in both cohorts and across all three propensity score methods. Discussion. This study is the first to examine differences in QI rates for home care clients receiving palliative and end-of-life care before and during COVID in Ontario. Key limitations in interpreting the results include a limited understanding of the typical variation in QI rates over time and reliance on the comparison of a single proportion (the QI) in judging potential differences in quality. Importantly, a strength of this study was that these QIs focused on outcomes of care and were mainly symptom-focused as aspects of high-quality care valued by home care clients and families and in contrast to previous studies focusing on structure and processes of care. These QIs also indicated how frequently quality concerns may be occurring for those receiving palliative and end-of-life home care. Conclusion. It appears that QI rates did not change over the course of the pandemic in this population. Future work should be directed to understanding the temporal variation in these QI rates, risk-adjusting the QI rates for further comparison among jurisdictions, provinces, and countries and in creating benchmarks to project acceptable rates of different QIs. / Thesis / Master of Science in Nursing (MSN)

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Thesis advisor: Judith A. Vessey / Background: The number of children with medical complexity (CMC) cared for by parental caregivers is increasing in the United States. Studies reveal parental caregivers experience significant caregiver burden, often attributed to the disease management required by CMC. However, literature has also identified numerous systemic challenges that arise while caring for CMC at home. The impact of systemic challenges on parental caregiver burden has not been examined, thus, the purpose of this dissertation is to explore the relationship between these systemic challenges and parental caregiver burden. Methods: Three studies were completed to explore this relationship. An integrative review of literature from 2014-2023 was completed to identify systemic challenges within the home care system and whether parental caregivers attribute burden to these challenges. A case-control secondary analysis of the National Survey of Children’s Health compared levels of burden between parental caregivers and parents of children without medical complexity as they relate to systemic challenges. Lastly, a qualitative descriptive study was conducted with parental caregivers living in Massachusetts to examine their experiences of caring for CMC. Results: The integrative review of 10 articles revealed a dynamic and interconnected relationship between systemic challenges and parental caregiver burden. The secondary analysis comparing 1,352 parents (n = 676 parental caregivers) revealed significant associations and increased odds of experiencing burden among parental caregivers while navigating systemic challenges. Finally, three themes capturing the experiences of parental caregivers (N=11) emerged from collected qualitative data; lack of discharge preparedness causes emotional distress, care becomes increasingly complex creating new unanticipated challenges, and the psychological toll of parents assuming provider role. Conclusion: The findings from this dissertation provide data-driven evidence to support a relationship between systemic challenges of caring for CMC and parental caregiver burden. This greater understanding of parental caregiver experiences highlights the need for a more holistic perspective in evaluating the care of CMC at home such that systemic challenges, and not a child’s medical needs, are the focus of future exploratory, intervention, and health policy work. / Thesis (PhD) — Boston College, 2024. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

Thesis (MEdPsych)--University of Stellenbosch, 2002. / ENGLISH ABSTRACT: My study aims to explore the feelings of and coping strategies used by a group of mothers of young children with an intellectual disability. I used two validated questionnaires and, at a later date, a semi-structured interview with each research participant. My analyses of the questionnaires' data provided me with tentative themes for inclusion during the semi-structured interviews. The combination of quantitative and qualitative research methodologies resulted in the confirmation and expansion of some of the data, but contradictions between other data. I used lay theory as one explanation for the contradictory findings. My study found that the mothers of young children with an intellectual disability experience a range of feelings and use a combination of different coping strategies, a pragmatic coping style being common to all the participants. I conclude by acknowledging the inherent capabilities of my research participants and encouraging service providers to empower parents of young children with an intellectual disability. / AFRIKAANSE OPSOMMING: Die doel van die studie is die ondersoek van gevoelens en hanteringstrategiee van 'n groep moeders vanjong kinders met 'n kognitiewe gestremdheid. Ek het aanvanklik gebruik gemaak van twee geldige vraelyste en na afloop daarvan is 'n semigestruktureede onderhoud gevoer met elke deelnemer. Tentatiewe temas verkry uit geanaliseerde vraelys data is ook gebruik/ingesluit gedurende die semi-gestruktureede onderhoud. Die kombinasise van kwantitatiewe en kwalitatiewe navorsingsmetttodologiee het gelei tot die bevestiging en uitbreiding van sekere data, maar was ook weer teenstrydig met van die ander data. Ek het leke teorie gebruik as verklaring vir die teenstrydighede. My studie het bevind dat hierdie moeders 'n wye verskeidenheid gevoelens ervaar en dat hulle ook van verskeie hanteringstrategiee gebruik maak. Die pragmatiese hanteringstyl was die mees algemene onder die deelnemers. Samevattend het ek erkenning verleen aan die inherente vermoens van die deelnemers en ook diensverskaffers aangemoedig om ouers van jong kinders met 'n kognitiewe gestremdheid te bemagtig.

Bakgrund: Palliativ vård handlar om att ge stöd till patienten och anhöriga under och efter vårdtiden. De ”6 s:n” är en arbetsmodell inom palliativ vård där patienten har rätt till självbestämmande och att upprätthålla sina sociala relationer, även stöd till anhöriga ingår. Anhöriga har en betydelsefull roll i den palliativa vården, deras närvaro skapar möjlighet för den döende att vara hemma i livets slutskede. Syfte: Syftet var att beskriva anhörigas upplevelse av palliativ vård i hemmet under livets slutskede. Metod: Litteraturöversikt baserad på 15 vetenskapliga artiklar från fem olika länder med kvalitativ ansats. Resultat: Fem kategorier identifierades kopplade till anhörigas upplevelser: Palliativa teamets inträde i hemmet, anhörigas vårdansvar, den medicintekniska utrusningens inverkan på vardagslivet, känslor och konsekvenser för anhöriga samt förbättringsmöjligheter och anhörigas uppfattning om palliativ vård. Slutsats: Anledningen till anhörigas vårdansvar var löftet att få dö hemma, uppgiften upplevdes krävande och gav konsekvenser på sömnen och deras fysiska och psykiska mående. Detta var genomgående i hela litteraturöversikten. Vården i hemmet sågs som den rätta platsen att dö på för alla parter, endast en anhörig uttryckte avsky för situationen. Enligt anhöriga var stödet bra dock fanns det ett ökat behov av mer resurser för fullständig trygghet. / Background: Palliative care is about providing support to both the patient and family during and after the time of care. The “6 s:n” is a working model in palliative care where the patient has the right to self-determination and to maintain their social relationships, which includes support to relatives. Relatives have an important role in palliative care, their present creates opportunity for the dying person to be at home in the final stages of life. Aim: The aim of this study was to describe relative’s experiences of palliative home care during the final stage of life. Methods: A literature review based on 15 scientific articles from five different countries with a qualitative approach. Results: Five categories were identified related to relatives experiences: The entry of palliative home care, relatives caring role, the impact of medical technology on everyday life, feelings and consequences for relatives and also improvement opportunities and relatives comprehend about palliative home care. Conclusions: The promise was the reason for relatives caring role, the caring role was an demanding task and gave impacts on their sleep and their physical and mental needs. This was consistently throughout the whole literature review. For all parties the home was seen as the right place to die, only one relative expressed disgust for the situation. According to relatives the support was good, but to complete full security for them it was an increased need for more resources.

Aim. The overall aims of this study were to develop a Chinese version Heart Manual and to examine its effectiveness in enhancing the health-related quality of life (HRQL) and psychological status of Chinese patients recovering from AMI. / Conclusion. The findings of this study provide evidence of areas, including the development of a culturally relevant needs-based Heart Manual, and the consideration of a home-based rehabilitation strategy, that could contribute to the development and improvement of cardiac rehabilitation in China. The study provides a unique tool to help Chinese nurses to meet the cardiac rehabilitative care needs of AMI patients. The study can also generate a much-needed impetus and indicate the direction for the development of cardiac rehabilitation nursing, especially home-based self-managed rehabilitative care in China. / Methods. In the first place, qualitative research was conducted to generate data regarding the experiences and needs of Chinese patients and their spouses immediately after their discharge from hospital following a first heart attack, and the views and beliefs of Chinese health professionals' concerning cardiac rehabilitative care in the hospitals of China. The information gained from the couples and health professionals was used to develop a Chinese version Heart Manual that is tailored to patient needs and adapted to the local culture. / Patients in the experimental group demonstrated better progress across a 6-month period than the control group, in terms of: significantly greater improvements in seven of eight domains of generic HRQL (p = 0.031-0.002) as assessed by the Chinese Mandarin version of Short Form 36-item healthy survey (CM:SF-36) and in five of seven dimensions of disease-specific HRQL (p = 0.008-0.000) as measured by the Chinese Mandarin version of Myocardial Infarction Dimensional Assessment Scale (CM-MIDAS); a significantly greater reduction in anxiety (p = 0.046) as assessed by the Chinese version of Hospital Anxiety and Depression Scale (C-HADS); a significantly greater reduction in the serum lipids of triglyceride (p = 0.04), total cholesterol (p = 0.01) and low-density lipoprotein (p = 0.01); a significantly better control of diastolic blood pressure (p = 0.02); and significantly fewer unplanned cardiac-related medical consultations (p = 0.035). However, the effects of the rehabilitation programme on depression, smoking cessation, serum lipids of high-density lipoprotein, systolic blood pressure, body mass index and blood glucose, as well as unplanned cardiac-related hospital readmissions and emergency room visits were not confirmed in this study. / Results. The Chinese version Heart Manual contains three sections. The first section consists of six weekly topics to educate the patient on coronary heart disease. The second section answers commonly asked questions about medication, Percutaneous Coronary Intervention (PCI), sexual life after a heart attack, and anxiety and depression after a heart attack. The third section presents information on the normal values for blood pressure, blood glucose and serum lipids, as well as on the saturated and unsaturated fats to be found in daily foods. A panel of experts and the potential users were invited to evaluate the validity of the contents in terms of the accuracy, appropriateness and applicability of the Manual. All of the content was considered to be accurate and appropriate by the expert panel, and the potential users found it was easy to understand and to follow. / Then, a randomized control group study with repeated measures was used to examine the effectiveness of a six-week home-based cardiac rehabilitation programme using the Chinese version Heart Manual. A total of 160 participants were recruited, and randomly assigned to either the experimental or the control group. Participants in the experimental group received the Chinese version Heart Manual at their discharge, and both groups received the usual care from the hospital. A telephone follow-up to both groups was made 3 weeks after hospital discharge. The outcomes measured included health-related quality of life, psychological status, smoking status, cardiac physiological risk parameters and unplanned health service use. Data collection was conducted at the baseline, at 6 weeks when the programme ended, and at 3 months and 6 months after hospital discharge. Inferential statistics, such as the multivariate repeated measures ANOVA, the Chi-square test, the Mann-Whitney U test and the Friedman test, were used to compare the differences of outcome variables between the experimental and the control group across the 6 months of the study period. / Wang, Wenru. / "November 2007." / Advisers: Sheila Twinn; Sek Ying Chair. / Source: Dissertation Abstracts International, Volume: 69-08, Section: B, page: 4671. / Thesis (Ph.D.)--Chinese University of Hong Kong, 2007. / Includes bibliographical references (p. 297-337). / Electronic reproduction. Hong Kong : Chinese University of Hong Kong, [2012] System requirements: Adobe Acrobat Reader. Available via World Wide Web. / Electronic reproduction. [Ann Arbor, MI] : ProQuest Information and Learning, [200-] System requirements: Adobe Acrobat Reader. Available via World Wide Web. / Abstract in English and Chinese. / School code: 1307.