PURPOSE: (1) Investigate supportive care needs and preferences of parents of children with cancer (2) Assess the feasibility and preliminary outcomes of a Parent Support Group Intervention (PSGI). METHODS: One-hundred and eight parents completed the Parent Support Survey (PSS). Data were utilized in the creation of a PSGI. The PSGI consisted of eight 1.5-hour sessions encompassing guided group discussion. As part of feasibility, acceptability, recruitment/retention and preliminary outcomes were assessed. Parents completed outcome measures assessing knowledge of disease/treatment management, community/hospital/family resources, perception of social support and feelings of distress/anxiety. RESULTS: From the PSS, 86/108 (80%) of parents expressed interest in a PSGI. Fourteen parents attended the PSGI only once and 14 parents attended the PSGI more than once. Outcome measure results depict favourable changes after group attendance. Recruitment and retention data highlight challenges. CONCLUSIONS: Information gained from this study will be used to improve planning and delievery of future PSGI’s.

Women treated for a gynecological cancer report longstanding post-treatment difficulties for which they rarely seek or receive help. Few intervention studies have successfully improved global sexual health within this population. Research in this domain is challenging due to inconsistent measurements of sexuality, low response rates and high attrition rates. The overarching study objectives were: (a) To contribute to the advancement of research on supportive care needs (including sexual health needs), desire for help, and predictors of needs; and, (b) To inform the development of services for gynecological cancer survivors. In Study 1, a qualitative interview study explored the experiences of 15 gynecological cancer survivors. Interviews were conducted and analysed based on the Interpretive Description approach . In Study 2 (for which results were analyzed in two parts), a descriptive, cross-sectional needs assessment was conducted to measure supportive care needs, desire for help, sexual health and vaginal changes, and service format preferences in 113 patients. In Part 1 of Study 2, descriptive and regression analyses explored patient needs, desire for help and potential predictors of these variables. In Part 2, a descriptive analysis explored sexual health needs and vaginal changes, desire for help with sexual health needs, and their associations with sociodemographic and medical variables. Qualitative results from Study 1 suggested that psychological, emotional and relational aspects of sexuality were as important to the participants as physiological sexual response. In the needs assessment, the strongest predictors of greater unmet needs and increased readiness for help were younger age and shorter time since treatment. Moderate to high sexual and social needs were equally prevalent in women recently treated and those treated several years prior to the study, suggesting that sexual and social needs may remain unaddressed over time. Further, many women who reported a need did not desire help, demonstrating the subjectivity of needs and distress, as well as the potential presence of barriers to seeking help. Both studies revealed a common finding, where sexual health needs were a product of the discordance between participants’ current sexual experiences and their perceptions of ideal sexual health. Overall, the two studies indicate that a significant subgroup of patients experience unmet needs in cancer survivorship, most of which are non-physical; also, while some needs were higher following treatment, unmet social and sexual health needs show little relationship with time since treatment. Ambivalence about receiving help with unmet needs is related to beliefs about the role of the health care team in meeting non-physical needs, as well as other perceived barriers. Patient’s perceived sexual health needs and barriers to receiving help should be evaluated within a comprehensive framework of needs and discussed one-on-one. Future research should explore the added predictive value of other groups of medical and psychological variables.

Bakgrund: En patient som vårdas på en intensivvårdsavdelning befinner sig i en särskilt utsatt situation då patienten är allvarligt sjuk eller skadad. Patienterna har och upplever vårdbehov som vårdpersonalens uppgift är att identifiera och tillgodose. Att inte ha förmåga att förmedla sina vårdbehov gör patienterna sårbara och vårdbehoven som patienten värdesätter kan inte tillgodoses. Syfte: Syftet med studien var att sammanställa vilka vårdbehov patienter som vårdades på en intensivvårdsavdelning upplevt och undersöka om vårdbehoven tillgodosågs under vårdtiden. Metod: En kvalitativ litteraturöversikt med deskriptiv design baserades på 21 vetenskapliga artiklar som sedan sammanställdes till en narrativ syntes. Resultat: Resultatet visar att patienterna under sin intensivvårdstid upplevde både psykiska och fysiska behov. Patienterna uttryckte ett stort behov av mänsklig kontakt och anhöriga tillgodosåg främst det behovet. Att inte kunna uttrycka sig verbalt var ett stort hinder för patienterna som uttryckte ett behov av att göra sig förstådd och att få information om sin situation. En icke fungerande kommunikation mellan patienterna och vårdpersonalen var den största anledningen till att vårdbehoven inte tillgodosågs. Slutsats: Trots tidigare forskning, teorier, värdegrunder, kompetensbeskrivningar och lagar som beskriver vikten av att vårda patientens psykiska hälsa genom ett personcentrerad och ett etiskt förhållningssätt frångår vårdpersonalen ofta detta inom intensivvård. Vårdpersonal behöver bli bättre på att identifiera och tillgodose dessa psykiska behov. Det finns ett behov av att fördjupa specialistutbildningen för intensivvårdssjuksköterskor där det psykologiska patientperspektivet får en större del. / Background: A patient being treated in an intensive care unit is in a particularly vulnerable situation when the patient is often seriously ill or injured. Patients experience care needs that is the healthcare staff's task is to identify and supply. Being unable to convey their care needs makes the patients vulnerable and the care needs that the patient values ​​can not be met by healthcare staff. Aim: The aim of the study was to compile the care needs of patients who were treated in an intensive care unit and to investigate whether care needs were met during the care period.  Method:A qualitative literature review with descriptive design based on 21 scientific articles, then compiled into a narrative synthesis.  Result: The result shows that during the intensive care period, patients experienced psychological and physical needs. Patients expressed a great need for human contact wich their relatives mainly addressed. Being unable to express yourself verbally was a major obstacle for patients who expressed a need to understand and to get information about their situation. Non-functioning communication between patients and healthcare staff was the main reason why care needs were not met. Conclusion: Despite prior research, theories, values, skill descriptions and laws describing the importance of caring for the psychological needs of the patient through an individual and ethical approach, the healthcare staff often abandon this in intensive care. Healthcare professionals need to be better at identifying and meeting these psychological needs. There is a need to deepen specialist education for intensive care nurses, where the psychological patient perspective gets a greater part.

The diploma thesis deals with foster care in the Czech Republic as well as it represents its legislation. The thesis follows up psychosocial aspects that are closely connected with foster care. It describes aspects such as psychosocial parenthood and motivation, which encourages foster parents to provide foster care. Also, it represents system of values and motives, that are very significant when considering foster care. The thesis investigates the needs of foster parents as well as it describes the needs, that are considered significant and whether those needs meet their expectations. Plenty of valuable information, which are related to the topic of foster parenting, were provided by foster parents, who gave their personal reflection, that was verified by brief research probe. The discussion stated in the end of the thesis summarizes the motives, which are frequently mentioned in the topic, including their possible difficulties as well as the thought about the reserves of current support given by the state and by accompanying organizations while satisfying the needs of foster parents.

Este estudo objetivou identificar na literatura de saúde textos que abordassem aspectos do desenvolvimento de crianças dependentes de ventilador; caracterizar ações de cuidado realizadas ou propostas para a promoção do desenvolvimento dessas crianças, assim como, analisá-las, segundo o referencial de necessidades essenciais da infância proposto por Brazelton e Greenspan (2002). O processo de busca bibliográfica realizado nas bases de dados PubMed, Lilacs, Embase e Cinahl e a leitura dos resumos, possibilitaram a organização dos artigos localizados em 17 grupos temáticos, sendo eleitos para a análise temática de conteúdo somente os que potencialmente continham informações relacionadas às perguntas da pesquisa. O corpus da análise constituiu-se de 35 artigos internacionais que pertenciam aos seguintes grupos temáticos: (1) processo de transição do hospital para casa/comunidade, (2) experiência da criança e da família, (3) interação criança-cuidador, (4) qualidade de vida, (5) proteção e segurança e (6) artigos de revisão. Os critérios para seleção dos documentos e análise pautaram-se no modelo metodológico de análise de Bardin (1977). A análise temática possibilitou a construção de duas categorias sobre o ambiente de cuidados e o desenvolvimento de crianças dependentes de ventilador. A categoria Concepções e práticas que resultam em cuidado desigual agrupou as diferentes concepções sobre infância e dependência de tecnologia ventilatória, e, como conseqüência, os contextos de assistência diversos, ou mesmo, opostos aos quais as crianças em ventilação prolongada foram submetidas. Revelou as ações, pensamentos, experiências e situações que dão existência ao contexto desfavorável ao atendimento das necessidades integrais da criança ou do adolescente dependente de ventilador, assim como aquelas que proporcionam condições mais favoráveis ao desenvolvimento. Sinalizou tanto as oportunidades como os desafios que estavam presentes em todos os cenários de atenção à saúde da criança e estabeleciam-se nas interações entre criança, ambiente e cuidador, resultando em maior ou menor desenvolvimento do potencial de cada criança. A categoria Potenciais de desenvolvimento efetivados versus potenciais de desenvolvimento comprometidos forneceu evidências sobre a competência da criança dependente de ventilador nas tarefas esperadas do desenvolvimento, tais como a socialização e o aprendizado, favorecidas no contexto de cuidados integrais. Ainda, descreveu distúrbios físicos, comportamentais e de desenvolvimento, potencialmente associados a contextos desfavoráveis, marcando os prejuízos a que seu potencial foi submetido. Notaram-se, nos artigos analisados, a preocupação e o empenho dos pais, profissionais e instituições para melhorar o contexto de atenção às necessidades de saúde das crianças dependentes de ventilador. No entanto, destacaram-se as ações que privilegiam a necessidade de proteção física e segurança em detrimento das demais necessidades essenciais para o desenvolvimento / This study aimed to identify in health literature papers that dealt with developmental aspects of ventilator-dependent children, to characterize care actions proposed or given so as to promote these childrens development, and at the same time to analyze such actions according to the Irreducible Needs of Children framework proposed by Brazelton and Greenspan (2002). Search for bibliography in PubMed, Lilacs, Embase and Cinahl and abstract reading made it possible to organize articles in 17 theme groups. However, theme analysis was carried out using only the articles that potentially contained information related to the research questions. Analysis corpus is made up of 35 articles from foreign sources belonging to the following group themes: (1) transition process from hospital to home/community, (2) childs and familys experience, (3) child-care giver interaction, (4) life quality, (5) protection and safely and (6) review articles. Criteria to select documents and analysis followed Bardins (1977) methodological model analysis. Theme analysis enabled the construction of two categories about care settings and ventilator-dependent children. The category Concepts and practices resulting in unequal care encompassed different concepts about childhood and ventilation technology dependence and thus the different or even opposite settings concerning care to which prolonged ventilator-dependent children are submitted. This concept also revealed actions, thoughts, experiences and situations that bring about both the unfavorable setting of providing for the comprehensive needs of ventilator-dependent child or adolescent and those that provide more favorable conditions for their development. It also pointed to opportunities and challenges present in all settings pertaining to the childs health care that are established in the interactions between child, environment and caregiver, resulting in higher or lower level of development of each childs full potential. The category Effective developmental potentials vs. Compromised developmental potentials provided evidences about competences of the ventilator-dependent child to perform developmental tasks, such as socializing and learning, which a comprehensive care setting favors. It also described physical, behavioral and developmental disorders potentially associated with unfavorable settings which compromise the childs and adolescents full potential. The analyzed studies showed that parents, health care professionals and institutions are concerned and making efforts to improve the health care setting of ventilator-dependent children. However, actions aimed at providing physical protection needs and safety are more favored to the detriment of other essential needs for their full development

The shortage of healthcare workers and doctors in the developing world compared to the developed world is a problem, and will continue to be so, due to the continual migration of qualified professionals and the inability of the state to remedy these shortfalls. A shortage of healthcare workers and specialist doctors will seriously hamper the Government’s National Health Insurance (NHI) plan, as well as the sustainability of the private health care sector. In addition, the duration of medical training in South Africa is exceptionally long. The three major hospital groups and other private corporates have over the last number of years taken limited initiative to fund education projects in conjunction with the academic institutions. However, these projects have been poorly focused and have been managed in an unstructured and detached manner. There is a desire from the private sector to get involved in these projects on a much larger scale through more formalised structures. Given this background, the primary objective of this research is to develop a business model for medical subspecialty training to complement the current academic subspecialty training in South Africa. A trial model for training subspecialists in reproductive medicine was developed as a first attempt to address the threatening shortages and training duration. This trial programme is the basis of this research. A two-phased process was used in collecting data. In Phase 1 data was collected from stakeholder groups. The results of this survey assisted in generating variables to include in the measuring instrument for the survey in Phase 2. In Phase 2 the perceptions and expectations of sub-specialists (reproductive subspecialists and cardiologists) regarding sub-specialty training was collected. The results of the demographic variables confirm the aging profile of subspecialist and the need to ensure succession. The results further showed that cardiologists and reproductive subspecialist expectations of the training of subspecialists are very similar except for their expectations on the training duration. Reproductive subspecialist respondents agreed more than cardiology subspecialist respondents that the training duration is too long. The biggest gap between perceptions and expectations is also with the factor training. The results showed that the expectations of subspecialists are not met for training. From these results a business model for the training of medical subspecialists is proposed. This proposed business model can play a complementary role to the existing state controlled system and form the bases of Public Private Partnerships (PPP) in medical training. This proposed business model will fit a developing country were the focus is on primary healthcare, with financial and capacity constraints. The proposed model would require role players to bring about change to accommodate a larger scale Public Private Partnership (PPP) to ensure the implementation of the model. The proposed decentralised business model for training subspecialists would allow the trainee subspecialist to practise as a specialist thus maintaining an acceptable income, and enable an expedited completion and lead to a wider dissemination of medical expertise that can be delivered in a wider national foot print. It further will provide for a structured Public Private Partnership.

Women treated for a gynecological cancer report longstanding post-treatment difficulties for which they rarely seek or receive help. Few intervention studies have successfully improved global sexual health within this population. Research in this domain is challenging due to inconsistent measurements of sexuality, low response rates and high attrition rates. The overarching study objectives were: (a) To contribute to the advancement of research on supportive care needs (including sexual health needs), desire for help, and predictors of needs; and, (b) To inform the development of services for gynecological cancer survivors. In Study 1, a qualitative interview study explored the experiences of 15 gynecological cancer survivors. Interviews were conducted and analysed based on the Interpretive Description approach . In Study 2 (for which results were analyzed in two parts), a descriptive, cross-sectional needs assessment was conducted to measure supportive care needs, desire for help, sexual health and vaginal changes, and service format preferences in 113 patients. In Part 1 of Study 2, descriptive and regression analyses explored patient needs, desire for help and potential predictors of these variables. In Part 2, a descriptive analysis explored sexual health needs and vaginal changes, desire for help with sexual health needs, and their associations with sociodemographic and medical variables. Qualitative results from Study 1 suggested that psychological, emotional and relational aspects of sexuality were as important to the participants as physiological sexual response. In the needs assessment, the strongest predictors of greater unmet needs and increased readiness for help were younger age and shorter time since treatment. Moderate to high sexual and social needs were equally prevalent in women recently treated and those treated several years prior to the study, suggesting that sexual and social needs may remain unaddressed over time. Further, many women who reported a need did not desire help, demonstrating the subjectivity of needs and distress, as well as the potential presence of barriers to seeking help. Both studies revealed a common finding, where sexual health needs were a product of the discordance between participants’ current sexual experiences and their perceptions of ideal sexual health. Overall, the two studies indicate that a significant subgroup of patients experience unmet needs in cancer survivorship, most of which are non-physical; also, while some needs were higher following treatment, unmet social and sexual health needs show little relationship with time since treatment. Ambivalence about receiving help with unmet needs is related to beliefs about the role of the health care team in meeting non-physical needs, as well as other perceived barriers. Patient’s perceived sexual health needs and barriers to receiving help should be evaluated within a comprehensive framework of needs and discussed one-on-one. Future research should explore the added predictive value of other groups of medical and psychological variables.

Individuals with advance-stage illnesses frequently face illness or treatment-related adverse effects in the mouth. These adverse effects can have serious consequences. Despite that, the importance of oral care in this population is often overlooked and there are no definitive guidelines as to what kind of oral care should be provided to these individuals. Given that, our study aims were to explore and better understand the oral health-related concerns, perceived oral care needs of palliative care patients and the berries that face in accessing dental care services. We conducted a qualitative description study by recruiting a purposive sample of 11 participants with advanced stage health conditions from the outpatient palliative care services of the University of Iowa Hospitals and Clinics. Data were collected using in-depth, semi-structured interviews using an interview guide. All interviews were fully transcribed, with the data managed with Atlas.ti software to facilitate the analysis. All participants had oral concerns although they varied widely from person to person and their illness statuses. The most significant concerns were related to dry mouth, loose dentures, and eating difficulties. Among those who stated that they would seek dental care if required, they were not planning on seeking dental care even though they had treatable oral problems, suggesting a mismatch between their oral health status and their perceived needs. The frequently observed barriers that prevented them from seeking dental care were their illness and illness related priorities, finances, feeling discriminated against by the dentist, and a dislike towards the dentist. Providing information to the palliative care clinicians about the significance of oral health and its impact, incorporating a dental care provider in palliative care team, and providing timely information to individuals with advanced health conditions may enhance the understanding of their oral health problems and help them better manage their oral health and may enhance their dental care seeking behavior.

Bakgrund: Befolkningen i Sverige blir allt äldre och äldre personer med komplexa vårdbeho vökar. År 2014 var cirka 500000 personer 80 år eller äldre i Sverige och detta beräknas öka till 800000 år 2030. Allt fler äldre vårdas i ordinärt boende och många av dem har komplexa vårdbehov som kräver vård både från landsting, primärvård och kommunal hälso-och sjukvård. Av den anledningen är samarbetet mellan dessa verksamheter en avgörande faktor för att omvårdnaden ska uppnå den kvalitet som de äldre med komplexa vårdbehov har rätt till. Specialistsjuksköterskorfrån de olika verksamheterna har här en viktig roll och det är en utmaning både för denne men även övrig vårdpersonal. Syfte: Syftet med studien är att beskriva specialistsjuksköterskors erfarenheter av samarbete mellan verksamheter i omvårdnaden av äldre med komplexa vårdbehov. Metod: Kvalitativ innehållsanalys med induktiv ansats användes för att kunna besvara studiens syfte. Sju intervjuer genomfördes med både specialistsjuksköterskor och sjuksköterskor som arbetade inom primärvård eller kommunal hälso- och sjukvård. Intervjuerna spelades in, transkriberades och analys gjordes enligt Graneheim och Lundman (2004). Resultat: I resultatet framkom att samarbete mellan olika verksamheter är komplex. Det framkom många faktorer som försvårar vården av den äldre med komplexa vårdbehov och det krävs engagemang och vilja från all vårdpersonal för att samarbetet ska fungera. Slutsats: Personcentrerad vård har stor betydelse för samarbetet mellan verksamheter i omvårdnaden av äldre med komplexa vårdbehov. Att bedriva ett samarbete mellan verksamheter är komplex och flera faktorer påverkar hur det fungerar. / Background: The population in Sweden is getting older and the number of olderpeople is increasing with complex care needs. In 2014, approximately 500,000 people were80 years or older in Sweden and this is estimated to increase to 800,000 by 2030. More and more older people are being cared for in ordinary housing and many of them have complex care needs that require care from county councils, primary care and municipal health and healthcare. For this reason, the collaboration between these activities is a decisive factor for the nursing to achieve the quality to which the older with complex care needs are entitled. Specialist nurses from the various activities have an important role and it is a challenge both for them but also for other care staff. Aim: The aim of this study is to describe specialist nurses’/nurses’ experience of collaboration between establishments in nursing care of older people with complex care needs. Method: Qualitative content analysis with inductive approach was used to answer the aim of the study. Seven interviews were conducted with both specialist nurses and nurses working in primary care or municipal health care. The interviews were recorded, transcribed, and analyzed according to Graneheim and Lundman (2004). Results: The results showed that collaboration between different activities is complex. Many factors emerged that make it more difficult to care for the older with complex care needs. The commitment and willingness of all care staff is required for the collaboration to work. Conclusion: Person-centered care is of great importance for the collaboration between activities in the care of the older with complex care needs. Conducting a collaboration between establishments is complex and several factors affect how it works.

Le diagnostic de cancer et les traitements associés vont entrainer un bouleversement de la vie du patient mais aussi de son entourage, et en particulier des proches-aidants. Ces derniers devenant « aidant » doivent assumer de nouvelles responsabilités qui peuvent entrainer des problèmes de santé, une altération de leur qualité de vie et ainsi de manière générale des difficultés d’ajustement face à la maladie (e.g., altération du fonctionnement émotionnel, physique, social et professionnel, symptômes somatiques, détresse émotionnelle). Les proches-aidants ont ainsi besoin du soutien des professionnels de santé pour faire face à leur rôle d’aidant mais ils rapportent souvent des besoins en soins de support insatisfaits. Ce travail de thèse, inscrit dans un programme de recherche plus global, vise ainsi à mieux appréhender les besoins en soins de support des proches-aidants de patients atteints d’un cancer et leurs déterminants, à travers notamment l’implication des processus émotionnels. La première étude de ce travail a consisté à valider en français une échelle évaluant les besoins en soins de support des proches-aidants de patients atteints d’un cancer. La deuxième étude visait à déterminer des profils de proches-aidants plus à risques d’avoir au moins un besoin en soins de support insatisfait moyen ou fort selon des facteurs intrapersonnels (i.e., symptômes anxieux-dépressifs) et sociodémographiques et médicales (e.g., âge des patients et des proches-aidants, cancer métastatique ou non). Enfin, la troisième étude visait à tester le modèle théorique, validé en amont auprès des patients, selon lequel les compétences émotionnelles des proches-aidants auraient un effet bénéfique sur leurs besoins en soins de support insatisfaits via moins de symptômes anxieux-dépressifs. Ces résultats montrent l’importance de dépister et prendre en charge les besoins en soins de support des proches-aidants, surtout liés à la prise en charge du patient, à l’information et au soutien psychologique et émotionnel. Certains profils de proches-aidants pourraient représenter une population particulièrement à risques de difficultés qui nécessiteraient une attention particulière des professionnels de santé. Enfin, tenir compte des processus émotionnels, notamment des compétences émotionnelles et des symptômes anxieux-dépressifs, parait important pour la prise en charge en soins de support des proches-aidants. / Cancers causes a disruption in the lives of patients and their caregivers. They must assume new responsibilities that can lead to health problems, altered quality of life, and adjustment difficulties (e.g., impaired emotional, physical, social, and professional functioning, somatic symptoms, emotional distress). Thus, caregivers need support from health professionals to cope with their role but they frequently report unmet supportive care needs. This thesis work is a part of a more global research program and aims to better understand the supportive care needs of caregivers of cancer patients and their determinants, in particular through emotional processes. The first study of this work validated the French version of a scale assessing the unmet supportive care needs of caregivers of cancer patients. The second study identified profiles of caregivers at higher risk of having at least one moderate or high unmet supportive care need from intrapersonal factors (i.e. emotional distress) and socio-demographic and medical variables (e.g., age of patients and caregivers, metastatic cancer). Finally, the third study tested the theoretical model of the thesis work, already validated for cancer patients, which considers that the emotional competence of caregivers can reduce their unmet supportive care needs by reducing their anxiety and depression symptoms. The results highlight the importance of identifying and addressing the unmet supportive care needs of caregivers, especially related to cancer care, information, and psychological and emotional support. Some profiles of caregivers may represent a population at higher risk of having difficulties and requiring more attention from professionals. Finally, taking into account emotional processes, including emotional competence and anxiety and depression symptoms, may be essential in the supportive care of caregivers.