Cancer and serious mental illness – patient, caregiver and professional perspectives: study protocol

Aim: To explore the experience of serious mental illness and cancer from the perspective of patients, significant others and healthcare professionals involved in their care. Background: Serious mental illness is associated with poorer cancer outcomes. Those suffering from this comorbidity receive fewer specialist interventions and die earlier than the general population. Prior qualitative research in this area has comprised of a single study focussing on healthcare professionals and there is little evidence regarding the experiences of patients and caregivers.Design: A qualitative exploration using approximately 36 semi-structured interviews.Methods: Semi-structured digitally recorded interviews conducted with: adults living with serious mental illness and diagnosed with cancer; those providing them with informal support and care; and healthcare professionals. Questions will focus on the experience of having cancer and serious mental illness or caring for someone with this comorbidity, experiences of healthcare and priorities for patients and carers. Framework analysis will be used. Research Ethics Committee and Trust Research & Development approval was obtained. A steering group comprising six people with experience of either cancer or mental illness provided feedback and ratified the patient information sheets and interview schedules. Discussion: There is a paucity of research addressing stakeholder perspectives on the experience of cancer and of cancer services for people with serious mental illness. Dissemination of findings will inform practice relating to the care of an often neglected population, informing better support for their significant others and the professionals involved in their care.

“CAPACITAR O DOENTE ONCOLÓGICO COM DOENÇA AVANÇADA E/OU O CUIDADOR PARA A GESTÃO DA DOR EM DOMICÍLIO” “EMPOWER THE ONCOLOGIC PATIENT WITH ADVANCED DISEASE AT HOME AND/OR THE CAREGIVER FOR THE MANAGEMENT OF PAIN”

RESUMO ABSTRACT Comunicações orais e Posters Oral communications and posters Este formulário, após preenchido, e aceites as condições descritas no regulamento das Comunicações orais e Posters deve ser enviado para isnr@porto.ucp.pt After complete this form and accept the conditions described in the oral communications and posters regulation, please sent to isnr@porto.ucp.pt Tipo de comunicação (comunicação oral ou poster): Comunicação oral Type of communication: (oral communication or poster): Oral comunication Título (Title): “CAPACITAR O DOENTE ONCOLÓGICO COM DOENÇA AVANÇADA E/OU O CUIDADOR PARA A GESTÃO DA DOR EM DOMICÍLIO” “EMPOWER THE ONCOLOGIC PATIENT WITH ADVANCED DISEASE AT HOME AND/OR THE CAREGIVER FOR THE MANAGEMENT OF PAIN” Autoria (Authors): CORREIA, Isabel* (doutoranda em Enfermagem na Universidade de Lisboa) LOPES, Manuel (orientador do projeto) Afiliação dos autores (Authors affiliation): – Professora adjunta na Universidade de Évora, Escola Superior de Enfermagem de São João de Deus de Évora, doutoranda em enfermagem Universidade de Lisboa - – Professor Doutor em Enfermagem, Diretor da Escola Superior de Enfermagem de São João de Deus de Évora, Universidade de Évora E-mail: icorreia@uevora.pt - 964078445 mjl@uevora.pt Resumo (3000 caracteres com espaços) INTRODUÇÃO Um dos sintomas mais frequentes no doente oncológico com doença avançada é a dor. Segundo Palliative Care in European, a dor oncológica, tem uma importância especial porque o cancro é a segunda causa de morte em Portugal e por existir dor moderada a intensa em mais de 90% dos doentes em situação oncológica terminal. O desenvolvimento de um programa estruturado de intervenção de enfermagem que vá de encontro às necessidades do doente oncológico com doença avançada e/ou cuidador, relativamente à gestão da dor, poderá ter um impacto muito significativo no controlo da dor e de outros sintomas. OBJETIVOS Avaliar o efeito de um programa de Intervenção de Enfermagem na capacidade de gestão da dor por parte do doente oncológico com doença avançada e/ou o cuidador em domicílio. MATERIAIS E MÉTODOS A implementação do programa tem a duração prevista para 6 semanas. Compreende duas sessões educativas, três telefonemas e uma sessão de avaliação final. O programa foi elaborado, após uma Revisão sistemática de Literatura, com base no programa “ THE PRO-SELF”, nas Orientações Genéricas preconizadas pelo Plano Nacional de Luta Contra a dor e na Intervenção de enfermagem “Controle da Dor” da Nursing Intervention Classification (NIC). RESULTADOS O projeto encontra-se na fase de implementação e avaliação do programa educativo. No início os doentes não apresentam informação relativamente à gestão da dor, no final demonstram capacidade para a monitorização da dor e de outros sintomas e para a gestão da terapêutica, realizando os registos num diário de bordo. A literacia, a situação clínica e a disponibilidade interferem na capacidade de gestão. A proximidade da morte e a alteração do estado de consciência interferem na autonomia e na tomada de decisão. CONCLUSÃO Em fase de colheita e análise de dados. REFERÊNCIAS BIBLIOGRÁFICAS 1. FREIXO, Manuel. Metodologia Cientifica - Fundamentos, Metodos e Tecnicas. s.l. : Piaget, 2011. 2. Bulechek, Gloria M. e etal. Classificaçaõ das Intervenções de Enfermagem (NIC). Rio de Janeiro : elsevier, 2010. 3. Tsigaroppoulos, T. e etal. Problems faced by relatives caring for cancer patients at home. International Journal Of Nursing Practice. 15, 2009, Vol. 1, Nursing Pratice. 4. west, C.:Dodd,M., et al. Pain Control Program-an effective approach for cancer pain management. Oncology Nursing Forum. 1, 2003, Vol. 30, Oncology Nursing. 5. NR/rdonlyres/6861126B-C57A-46E1-B065-316C0CF8DACD/0/ControlodaDor.pdf, . (2008). . Consultado em 30 de Novembro de 2012 a partir de. Direcção-Geral da Saúde . http://www.portaldasaude.pt. [Online] 2008. [Citação: 30 de Novembro de 2012.] http://www.portaldasaude.pt/NR/rdonlyres/6861126B-C57A-46E1-B065-316COCF8DACD/0/Controlodador.pdf . Abstract (3000 characters with spaces) INTRODUCTION One of the most frequent symptoms in oncological patient with advanced disease is pain. According to Palliative Care in European, oncological pain, has a special importance because the cancer is the second most common cause of death in Portugal and there is moderate to severe pain in more than 90 % of patients in oncological terminal situation. The development of a structured program of nursing intervention that will meet the needs of the oncological patient with advanced disease and/or caregiver at home on pain management, will be able to provide for the management of pain, increasing knowledge for the control of pain while minimizing the associated symptoms that influence the quality of life of the patient and the caregiver's anxiety. PURPOSE/GOAL/AIM To evaluate the effect of an educational program of Nursing Intervention on pain management by the oncological patient with advanced disease and/or caregiver. RESEARCH/PROBLEM What is the effect of a structured program of nursing intervention directed to the patient and/or oncological patient caregiver with advanced disease at home, in the management of pain? METHODOLOGY Almost experimental study, with assessment of the management capacity of the oncological patient pain with advanced disease at home and/or informal caregiver, before and after the intervention of nursing (educational program) and transverse evaluation throughout the study. Population: oncological patients with advanced disease at home, with more than 18 years, and or family caregiver, attending an Oncology Unit – Hospital during the day. RESULTS Made an application in an Oncology service in oncological patients with advanced disease at home, it was found that at the beginning the patients did not present information regarding pain management, at the end demonstrated capacity for monitoring of pain and other symptoms and therapeutic management, performing a logbook records. CONCLUSION In the process of collection and analysis of data. KEYWORDS Educational Program; oncological patient; oncological pain.

Help-seeking for 'memory loss' by older adults in India : patient, caregiver and health providers' perspectives

ABSTRACT: Background. In India, prevalence rates of dementia and prodromal amnestic Mild Cognitive Impairment (MCI) are 3.1% and 4.3% respectively. Most Indians refer to the full spectrum of cognitive disorders simply as ‘memory loss.’ Barring prevention or cure, these conditions will rise rapidly with population aging. Evidence-based policies and practices can improve the lives of affected individuals and their caregivers, but will require timely and sustained uptake. Objectives. Framed by social cognitive theories of health behavior, this study explores the knowledge, attitudes and practices concerning cognitive impairment and related service use by older adults who screen positive for MCI, their primary caregivers, and health providers. Methods. I used the Montreal Cognitive Assessment to screen for cognitive impairment in memory camps in Mumbai. To achieve sampling diversity, I used maximum variation sampling. Ten adults aged 60+ who had no significant functional impairment but screened positive for MCI and their caregivers participated in separate focus groups. Four other such dyads and six doctors/ traditional healers completed in-depth interviews. Data were translated from Hindi or Marathi to English and analyzed in Atlas.ti using Framework Analysis. Findings. Knowledge and awareness of cognitive impairment and available resources were very low. Physicians attributed the condition to disease-induced pathology while lay persons blamed brain malfunction due to normal aging. Main attitudes were that this condition is not a disease, is not serious and/or is not treatable, and that it evokes stigma toward and among impaired persons, their families and providers. Low knowledge and poor attitudes impeded help-seeking. Conclusions. Cognitive disorders of aging will take a heavy toll on private lives and public resources in developing countries. Early detection, accurate diagnosis, systematic monitoring and quality care are needed to compress the period of morbidity and promote quality of life. Key stakeholders provide essential insights into how scientific and indigenous knowledge and sociocultural attitudes affect use and provision of resources.

Caregiver's interpret infants' early gestures based on shared knowledge about referents

Gestures are the first forms of conventional communication that young children develop in order to intentionally convey a specific message. However, at first, infants rarely communicate successfully with their gestures, prompting caregivers to interpret them. Although the role of caregivers in early communication development has been examined, little is known about how caregivers attribute a specific communicative function to infants' gestures. In this study, we argue that caregivers rely on the knowledge about the referent that is shared with infants in order to interpret what communicative function infants wish to convey with their gestures. We videotaped interactions from six caregiver-infant dyads playing with toys when infants were 8, 10, 12, 14, and 16 months old. We coded infants' gesture production and we determined whether caregivers interpreted those gestures as conveying a clear communicative function or not; we also coded whether infants used objects according to their conventions of use as a measure of shared knowledge about the referent. Results revealed an association between infants' increasing knowledge of object use and maternal interpretations of infants' gestures as conveying a clear communicative function. Our findings emphasize the importance of shared knowledge in shaping infants' emergent communicative skills.

Moderators of the Relationship between Family Caregiver Proxy-Ratings and Person with Dementia Self-Ratings of Quality of Life

As the dementia spectrum lacks any viable cure, quality of life is typically regarded as an essential measure of assessing the clinical course and evaluating interventions. With caregivers typically providing this rating to health professionals, the literature has noted inconsistencies between caregiver and person with dementia (PwD) ratings of quality of life and suggested several factors may moderate the rating relationship. To investigate this, an intraclass correlation coefficient was calculated to observe rating agreement and moderator regression analysis was conducted to explore potential moderators. Potential moderators of caregiver burden, caregiver age, caregiver income, PwD IADLs/ADLs, PwD education, PwD cognitive impairment, PwD depressive symptom severity, PwD behavioural symptom severity, as well as relationship between caregiver and PwD. Utilizing secondary data from 107 recruited dyads, analyses conducted found fair agreement between caregivers and those with dementia while none of the hypothesized factors were found to moderate the rating relationship.

O Cuidador de Enfermagem e o Cuidar em Uma Unidade de Terapia Intensiva; The Nursing Caregiver and the Caring in Intensive Care Units

There are several aggressive factors in Intensive Care Units (ICU), which reach not only patients, but the nursing caregivers, since they participate in complex procedures and death of patients. Nursing caregivers may have difficulties on their daily work routine that can influence the way of care. The goal of this study was to identify the aspects of nursing caregivers working in adult ICU. It is a describe-exploratory study with qualitative approach, developed among 21 ICU adult nursing caregivers of a school hospital in Paraná. The data were collected in May and July, 2009 by recorded and transcribed semi-structured interviews. Four categories for analysis were identified: the aspects of ICU assistance, the meaning of healthcare for the nursing caregivers, the understanding of healthcare positive aspects and disclosing the difficulties of caring. The results revealed that caring is related to some factors such as mixed feelings, the mental and physical damage caused by stress; the understanding of total caring, scientific-technique procedures, family engagement in the assistance and humanization. The positive aspects are related to the welfare due to satisfaction in the work done and recognition of work. The difficulties involved death situations, psychological and biological damages, establishing links with patients and the uncaring toward the nursing caregivers.

Qualidade de vida do cuidador de enfermagem e sua relação com o cuidar; Quality of life of the nursing caregiver and its relationship with care

Objective:To identify aspects that affect the quality of life of nursing caregivers and their relationship with care in an Intensive Care Unit for Adults (A-ICU). Methods:This was a descriptive study with qualitative approach, taking as subjects 21 professionals who constitute the nursing staff of the A-ICU of a school hospital in Maringá-PR. Unstructured interview was used as a strategy to collect data, conducted between May and June 2009. Data analysis was based on the method of content analysis. The categories identified were: overlooking improvement in quality of life related to the resources in an A-ICU; the quality of life influencing the form of care; interpersonal relationships into the health team reflecting on the quality of life and care. Results:The analysis of caregivers’ speech and the results of the observation showed that there is correlation between the aspects they consider influential in their quality of life and the way of caring for patients in an A-ICU.Conclusion: The findings indicate that, among the influential aspects, the stressful factors overlap the enhancing ones. From this perspective, dealing with caregiver’s suffering might be the starting point for the improvement in quality of care in an A-ICU.

Humming as a mean of communicating during meal time situations : A Single Case study involving a women with severe dementia and her caregiver

Objective: ‘Music Therapeutic Caregiving’, when caregivers sing for or together with persons with dementia during morning care situations, has been shown to increase verbal and nonverbal communication between persons with dementia and their caregivers, as well as enhance positive and decrease negative emotions in persons with dementia. No studies about singing during mealtimes have been conducted, and this pilot project was designed to elucidate this. However, since previous studies have shown that there is a risk that persons with dementia will start to sing along with the caregiver, the caregiver in this study hummed such that the person with dementia did not sing instead of eat. The aim of this pilot project was threefold: to describe expressed emotions in a woman with severe dementia, and describe communication between her and her caregivers without and with the caregiver humming. The aim was also to measure food and liquid intake without and with humming. Method: The study was constructed as a Single Case ABA design in which the ordinary mealtime constituted a baseline which comprised a woman with severe dementia being fed by her caregivers in the usual way. The intervention included the same woman being fed by the same caregiver who hummed while feeding her. Data comprised video observations that were collected once per week over 5 consecutive weeks. The Verbal and Nonverbal Interaction Scale and Observed Emotion Rating Scale were used to analyze the recorded interactions. Results: A slightly positive influence of communication was shown for the woman with dementia, as well as for the caregiver. Further, the women with dementia showed a slight increase in expressions of positive emotions, and she ate more during the intervention. Conclusion: Based on this pilot study no general conclusions can be drawn. It can be concluded, however, that humming while feeding persons with dementia might slightly enhance communication, and positive expressed emotions in persons with dementia. To confirm this, more studies on group levels are needed. Because previous studies have found that caregiver singing during caring situations influences persons with dementia positively it might be desirable to test the same during mealtime.

Screening children with developmental coordination disorder : the development of the caregiver assessment of movement participation

This study investigated the psychometric properties of the Caregiver Assessment of Movement Participation (CAMP), which was developed to measure and identify children with movement participation problems in home contexts. The test-retest reliability, as well as the concurrent and contrast-group validity of the 35-item parent-proxy CAMP, was examined on 312 children aged 5 to 8 years using intraclass correlation, factor analysis, and the Rasch model. Initial findings on the CAMP appeared to support its validity. Testing on other properties from a practical perspective, such as finding the best rating scale structure and cutpoints, are recommended before using the instrument for child health surveillance screening.

Psychometric properties of the caregiver assessment of movement participation scale for screening children with development coordination disorders

Using Rasch analysis, the psychometric properties of a newly developed 35-item parent-proxy instrument, the Caregiver Assessment of Movement Participation (CAMP), designed to measure movement participation problems in children with Developmental Coordination Disorder, were examined. The CAMP was administered to 465 school children aged 5–10 years. Thirty of the 35 items were retained as they had acceptable infit and outfit statistics. Item separation (7.48) and child separation (3.16) were good; moreover, the CAMP had excellent reliability (Reliability Index for item = 0.98; Person = 0.91). Principal components analysis of item residuals confirmed the unidimensionality of the instrument. Based on category probability statistics, the original five-point scale was collapsed into a four-point scale. The item threshold calibration of the CAMP with the Movement Assessment Battery for Children Test was computed. The results indicated that a CAMP total score of 75 is the optimal cut-off point for identifying children at risk of movement problems.

The primary caregiver approach

The early years of a child’s life are especially important, and the quality of those experiences set the scene for the future. Children’s first and most enduring bond is within their own family. However, a high proportion of young children in the Australia spend time as the responsibility of non-family adults within the many different types of early years settings.

The NQS outlines through Quality Area 5: Relationships with children, the need for educators to develop and maintain respectful and equitable relationships with each child. These relationships are brought about by educators and children forming trusting and reciprocal bonds where each child feels secure and included.

This book gives practical advice on:

the importance of attachment for children’s emotional wellbeing
implications for early years educators and the need for a primary caregiver system in group settings
details of the role of a primary caregiver for children and their families
dealing with uncertainty about how the primary caregiver system should work
how managers can support educators in their primary caregiver role