In caregiving literature, it is often the female gender that has been the focus of attention, and in particular women’s unpaid labor. Studies also tend to make comparisons between men’s and women’s caregiving, using men’s caregiving experiences to show not only that women face greater burdens, but also that men’s needs can be minimized. This means that while gender analysis is not uncommon in the caregiving literature, gender tends to be equated with womanhood. This is impeding us from moving the debates on care and caregiving forward. The dissertation argues – through a phenomenological analysis of men’s motives, experiences and perceptions of care and caregiving – that much could be gained if we were to rectify the gender bias by bringing attention to caregiving men in the gender-aware and masculinity-informed way that is lacking in the family caregiving literature at present. For this dissertation, 19 caregiving adult sons and sons-in-law were interviewed. The aim of the study is twofold. Firstly, it attempts to contribute to the rectification of the gender bias found in the literature on family caregiving by focusing on men’s caregiving and answering the following research questions: What motivates men to provide care for their elderly parents? How do adult sons experience caregiving? What do adult sons think that care and caregiving are, i.e. what are their perspectives on care? Secondly, this dissertation also aims to explore whether a gender-aware and masculinity-informed perspective can be used to enhance our understanding of caregiving. This study discusses how motives, experiences and perspectives, which have so far been interpreted as unique to women, are also matters that men talk about and consider important in caregiving. Thus, this study shows that a gender-aware and masculinity-informed perspective on care can increase our understanding of family caregiving and contribute to rectify the gender bias that care research suffers from. The study suggests that caregiving men should not solely be regarded as empirically interesting. This is because they are an unexploited and theoretically profuse source of information about caregiving. / I omsorgslitteraturen är det ofta kvinnor som är i fokus, och i synnerhet för att synliggöra kvinnors obetalda omsorgsarbete. Omsorgsstudier tenderar också att göra jämförelser mellan män och kvinnor där mäns omsorgserfarenheter används för att påvisa kvinnors tyngre börda samtidigt som mäns omsorgsbehov kan ges lägre betydelse. Detta innebär att även om genusanalyser inte är ovanliga inom omsorgslitteraturen så finns en benägenhet att genus likställs med kvinnors erfarenheter. Detta innebär att omsorgslitteraturen kännetecknas av en genusbias som hindrar vidareutvecklingen av debatten om omsorg och omsorgsgivande. Syftet med avhandlingen är därför tvåfaldig. För det första ämnar denna studie att bidra till att problematisera det genusbias som finns inom omsorgsforskning. Detta genom att fokusera på män som ger omsorg och svara på följande frågeställningar: Vad motiverar män att ge omsorg till  sina gamla föräldrar? Hur upplever vuxna söner och svärsöner omsorgssituationen? Vad anser vuxna söner och svärsöner att omsorg är dvs. vad är deras perspektiv på omsorg? För det andra, syftar denna avhandling till att undersöka om ett genus- och maskulinitetsmedvetet perspektiv kan användas för att vidga omsorgsforskningens förståelse av omsorg. Avhandlingen använder sig av en fenomenologisk ansats för att analysera intervjuer med 19 vuxna söner och svärsöner som ger omsorg till sina äldre anhöriga. Deras berättelser visar att motiv, erfarenheter och perspektiv på omsorg, som hittills tolkats som unika för kvinnor, också är aspekter som män talar om och tycker är viktiga i omsorgsgivande. Således visar analyserna i denna avhandling att ett genus och maskulinitetsmedvetet perspektiv på omsorg och omsorgsgivande kan bidra till en ökad kunskap inom omsorgsforskningen, men inte bara när det gäller att ifrågasätta det genusbias som finns utan också för att omsorgsgivande män har en del att bidra med till omsorgsdebatten. Avhandlingen argumenterar nämligen för att omsorgsgivande män inte bara bör betraktas som empiriskt intressanta. Deras föreställningar, erfarenheter och perspektiv erbjuder också möjligheter för teoriutveckling inom omsorgsforskningen.

No description available.

Introdução: Este estudo tem como objeto as práticas de autocuidado e o cuidado familiar do indígena com Doença Crônica Não Transmissível. Objetivo: Analisar as práticas de autocuidado e do cuidado familiar, seguido pela caracterização demográfica e socioeconômica, verificação da prevalência da Doença Crônica Não Transmissível, identificação das práticas de autocuidado, das características do cuidado familiar, avaliação do desempenho das Atividades da Vida Diária e Atividades Instrumentais da Vida Diária dos índios da etnia Mura, além da associação com as variáveis do estudo. Método: Estudo exploratório, descritivo, transversal, com abordagem quantitativa, de 198 índios adultos com Doença Crônica Não Transmissível, cadastrados no Polo-base Pantaleão do município de Autazes, Amazonas. Foi aplicado um formulário com questões referentes aos dados demográficos, socioeconômicos e de condição de saúde, às práticas de autocuidado e do cuidado familiar, além dos instrumentos como o Índice de Barthel e a Escala de Lawton. Na análise descritiva, procedeu-se a descrição dos dados por meio da distribuição de frequência, porcentagem e medidas descritivas (média, desvio padrão, amplitude mínima e máxima). Na análise inferencial foram empregados os testes Qui-Quadrado de Pearson e o Exato de Fisher para associação entre as variáveis, sendo adotado um nível de significância de 5%. Resultados: Houve predomínio do sexo feminino, com média de 59 anos. Quanto às práticas de autocuidado relacionadas aos hábitos alimentares e de vida: 92,5% relataram consumir frutas, 83,8% verduras, 98,0% legumes, 68,2% carne, 88,4% frango, 96,0% peixes; 86,4% não tabagistas, 92,4% não etilistas, 85,4% não praticantes de exercício físico e 97,5% de esporte. Com relação ao cuidado familiar, a dimensão instrumental e emocional demonstrou-se mais frequente, promovida pelos familiares como as filhas e os cônjuges. A avaliação do autocuidado nas Atividades da Vida Diária e Atividades Instrumental da Vida Diária constatou que a maioria é considerada independente funcional. Dos dados analisados, foi encontrada associação estatística entre as Doenças do Sistema Circulatório com os sinais e sintomas e a etiologia para o conhecimento da Doença Crônica Não Transmissível, internação hospitalar, restrição no consumo de alimento gorduroso, no uso de sal na refeição já servida e não seguir nenhuma restrição alimentar, medicamento, quantidade de medicamento, Dieta/alimentação e o comportamento na prática de autocuidado, Dieta/alimentação nas orientações recebidas sobre o autocuidado; as Doenças Nutricional e Endócrina Metabólica com o sexo, antecedente familiar, fisiologia e não ter conhecimento da Doença Crônica Não Transmissível, consumo de frango, não seguir nenhuma restrição alimentar, quantidade de medicamento, não seguir nenhuma prática de autocuidado, os aspectos emocionais e comportamentais para as dificuldades no autocuidado, Dieta/Alimentação para as orientações recebidas sobre o autocuidado; as Doenças do Sistema Osteomuscular e Tecido Conjuntivo com idade, renda pessoal, número de refeições, quantidade de medicamento e o conforto na prática de autocuidado. As Atividades da Vida Diária apresentaram associação estatística com a idade, escolaridade, autoavaliação de saúde, consulta na unidade, consumo de frutas, não realizar nenhuma prática de autocuidado, aspectos financeiros, físicos e não ter dificuldades no autocuidado Quanto às Atividades Instrumentais da Vida Diária, teve associação estatística com a idade, escolaridade, situação ocupacional, renda pessoal e familiar, Índice de Massa Corpórea, consumo de frutas, etilismo, exercício físico, aspectos físicos para as dificuldades no autocuidado, Dieta/alimentação nas orientações recebidas sobre o autocuidado, dimensão instrumental e material no apoio social. As dimensões do apoio social apresentaram associação estatística entre o instrumental com o arranjo familiar, número de moradores; o emocional com a idade e escolaridade; material com as doenças do sistema nervoso; a interação social positiva com idade, escolaridade, arranjo familiar e as doenças dos olhos e anexos. Conclusão: Diante dos resultados obtidos neste estudo, reconhecemos a importância dos profissionais de saúde do Polo-base nas questões sobre o conhecimento das práticas de autocuidado, e o apoio social promovido pela família para a abordagem no tratamento e acompanhamento ao índio com Doença Crônica Não Transmissível. / Introduction: This study objectifies the self-care practices and family caregiving to the Indigenous individual suffering from Non-Communicable Diseases (NCDs). Objective: To analyze the self-care practices and family caregiving followed by the demographic and socioeconomic profile, assessment of the prevalence of Non-Communicable Diseases, identification of self-care practices, characteristics of the family caregiving and evaluation of the performance in the Activities of Daily Living (ADLs) and in the Instrumental Activities of Daily Living (IADLs) among Mura Indigenous individuals, besides the association with the study variables. Method: Exploratory, descriptive, crosscut, quantitative study with 198 adult Indigenous individuals, Mura ethnicity, suffering from NCDs, registered at Pantaleão Primary Health Care Center in the municipality of Autazes, Amazonas State, Brazil. A formulary was applied with questions regarding demographic, socioeconomic data, health status, self-care practices and family caregiving, as well as instruments, such as the Barthel Index and Lawton Scale. In the descriptive analysis, data description was performed by means of percentage frequency distribution, and descriptive measures (mean, standard deviation, amplitude, maximum and minimum values). Inferential Statistical Analysis was performed by means of Pearsons Chi-square Test and Fishers Exact Test for variable association, significance level of 5%. Results: Female prevalence, average age of 59 years. Regarding self-care practices related to food and lifestyle habits, 92.5% reported fruit consumption, green leaves (83.8%), vegetables (98.0%), meat (68.2%), chicken (88.4%), and fish (96.0%); non-smokers (86.4%), non-alcoholic (92.4%), 85.4% do not exercise or practice sports (97.5%). In relation to family caregiving, the instrumental and emotional dimension was the most frequent, promoted by family members, such as daughters and spouses. Self-care assessment for the ADLs and IADLs evidenced that most individuals were functionally independent. From the analyzed data, statistical association was found between circulatory system diseases (CSDs) with their signs and symptoms and the etiology for NCD knowledge, hospitalization, restriction of high-fat food intake, addition of salt to the served food, non-compliance to any dietary guidelines, medication, amount of medication, diet/food and behavior for self-care practice, diet/food under the received self-care guidance; Endocrine, nutritional and metabolic diseases were associated with gender, family history, physiology and unawareness of NCDs, chicken consumption, non-compliance to any dietary guidelines, amount of medication, non-compliance to any self-care practice; emotional and behavioral aspects were associated with self-care deficits, Diet/Food with received self-care guidance; Osteomuscular system and connective tissue diseases were associated with age, income, number of meals, amount of medication and ease on the self-care practice. ADLs were statistically associated with age, schooling, health status self-assessment, health care center visits, fruit intake, non-compliance to any self-care practice, financial and physical aspects, and ease on self-care. As for the IADLs, they were statistically associated with age, schooling, occupational status, individual and family income, Body Mass Index (BMI), fruit intake, alcoholism, exercising, physical aspects for self-care deficits, Diet/food in the received self-care guidance, instrumental and material dimensions for social support. Social support dimensions evidenced statistical association between the instrumental and the family arrangement, number of residents; the emotional social support dimension was associated with age and schooling; the material dimension with nervous system diseases; positive social interaction with age, schooling, family arrangement and eye-related diseases. Conclusion: Due to the obtained results in this study, we recognize the importance of the healthcare professionals from the referred Primary Health Care Center in the issues regarding the knowledge of self-care practices, as well as the social support promoted by the family on the treatment approach and follow up to the Indigenous individual suffering from a Non-Communicable Disease.

Introdução: Este estudo tem como objeto as práticas de autocuidado e o cuidado familiar do indígena com Doença Crônica Não Transmissível. Objetivo: Analisar as práticas de autocuidado e do cuidado familiar, seguido pela caracterização demográfica e socioeconômica, verificação da prevalência da Doença Crônica Não Transmissível, identificação das práticas de autocuidado, das características do cuidado familiar, avaliação do desempenho das Atividades da Vida Diária e Atividades Instrumentais da Vida Diária dos índios da etnia Mura, além da associação com as variáveis do estudo. Método: Estudo exploratório, descritivo, transversal, com abordagem quantitativa, de 198 índios adultos com Doença Crônica Não Transmissível, cadastrados no Polo-base Pantaleão do município de Autazes, Amazonas. Foi aplicado um formulário com questões referentes aos dados demográficos, socioeconômicos e de condição de saúde, às práticas de autocuidado e do cuidado familiar, além dos instrumentos como o Índice de Barthel e a Escala de Lawton. Na análise descritiva, procedeu-se a descrição dos dados por meio da distribuição de frequência, porcentagem e medidas descritivas (média, desvio padrão, amplitude mínima e máxima). Na análise inferencial foram empregados os testes Qui-Quadrado de Pearson e o Exato de Fisher para associação entre as variáveis, sendo adotado um nível de significância de 5%. Resultados: Houve predomínio do sexo feminino, com média de 59 anos. Quanto às práticas de autocuidado relacionadas aos hábitos alimentares e de vida: 92,5% relataram consumir frutas, 83,8% verduras, 98,0% legumes, 68,2% carne, 88,4% frango, 96,0% peixes; 86,4% não tabagistas, 92,4% não etilistas, 85,4% não praticantes de exercício físico e 97,5% de esporte. Com relação ao cuidado familiar, a dimensão instrumental e emocional demonstrou-se mais frequente, promovida pelos familiares como as filhas e os cônjuges. A avaliação do autocuidado nas Atividades da Vida Diária e Atividades Instrumental da Vida Diária constatou que a maioria é considerada independente funcional. Dos dados analisados, foi encontrada associação estatística entre as Doenças do Sistema Circulatório com os sinais e sintomas e a etiologia para o conhecimento da Doença Crônica Não Transmissível, internação hospitalar, restrição no consumo de alimento gorduroso, no uso de sal na refeição já servida e não seguir nenhuma restrição alimentar, medicamento, quantidade de medicamento, Dieta/alimentação e o comportamento na prática de autocuidado, Dieta/alimentação nas orientações recebidas sobre o autocuidado; as Doenças Nutricional e Endócrina Metabólica com o sexo, antecedente familiar, fisiologia e não ter conhecimento da Doença Crônica Não Transmissível, consumo de frango, não seguir nenhuma restrição alimentar, quantidade de medicamento, não seguir nenhuma prática de autocuidado, os aspectos emocionais e comportamentais para as dificuldades no autocuidado, Dieta/Alimentação para as orientações recebidas sobre o autocuidado; as Doenças do Sistema Osteomuscular e Tecido Conjuntivo com idade, renda pessoal, número de refeições, quantidade de medicamento e o conforto na prática de autocuidado. As Atividades da Vida Diária apresentaram associação estatística com a idade, escolaridade, autoavaliação de saúde, consulta na unidade, consumo de frutas, não realizar nenhuma prática de autocuidado, aspectos financeiros, físicos e não ter dificuldades no autocuidado Quanto às Atividades Instrumentais da Vida Diária, teve associação estatística com a idade, escolaridade, situação ocupacional, renda pessoal e familiar, Índice de Massa Corpórea, consumo de frutas, etilismo, exercício físico, aspectos físicos para as dificuldades no autocuidado, Dieta/alimentação nas orientações recebidas sobre o autocuidado, dimensão instrumental e material no apoio social. As dimensões do apoio social apresentaram associação estatística entre o instrumental com o arranjo familiar, número de moradores; o emocional com a idade e escolaridade; material com as doenças do sistema nervoso; a interação social positiva com idade, escolaridade, arranjo familiar e as doenças dos olhos e anexos. Conclusão: Diante dos resultados obtidos neste estudo, reconhecemos a importância dos profissionais de saúde do Polo-base nas questões sobre o conhecimento das práticas de autocuidado, e o apoio social promovido pela família para a abordagem no tratamento e acompanhamento ao índio com Doença Crônica Não Transmissível. / Introduction: This study objectifies the self-care practices and family caregiving to the Indigenous individual suffering from Non-Communicable Diseases (NCDs). Objective: To analyze the self-care practices and family caregiving followed by the demographic and socioeconomic profile, assessment of the prevalence of Non-Communicable Diseases, identification of self-care practices, characteristics of the family caregiving and evaluation of the performance in the Activities of Daily Living (ADLs) and in the Instrumental Activities of Daily Living (IADLs) among Mura Indigenous individuals, besides the association with the study variables. Method: Exploratory, descriptive, crosscut, quantitative study with 198 adult Indigenous individuals, Mura ethnicity, suffering from NCDs, registered at Pantaleão Primary Health Care Center in the municipality of Autazes, Amazonas State, Brazil. A formulary was applied with questions regarding demographic, socioeconomic data, health status, self-care practices and family caregiving, as well as instruments, such as the Barthel Index and Lawton Scale. In the descriptive analysis, data description was performed by means of percentage frequency distribution, and descriptive measures (mean, standard deviation, amplitude, maximum and minimum values). Inferential Statistical Analysis was performed by means of Pearsons Chi-square Test and Fishers Exact Test for variable association, significance level of 5%. Results: Female prevalence, average age of 59 years. Regarding self-care practices related to food and lifestyle habits, 92.5% reported fruit consumption, green leaves (83.8%), vegetables (98.0%), meat (68.2%), chicken (88.4%), and fish (96.0%); non-smokers (86.4%), non-alcoholic (92.4%), 85.4% do not exercise or practice sports (97.5%). In relation to family caregiving, the instrumental and emotional dimension was the most frequent, promoted by family members, such as daughters and spouses. Self-care assessment for the ADLs and IADLs evidenced that most individuals were functionally independent. From the analyzed data, statistical association was found between circulatory system diseases (CSDs) with their signs and symptoms and the etiology for NCD knowledge, hospitalization, restriction of high-fat food intake, addition of salt to the served food, non-compliance to any dietary guidelines, medication, amount of medication, diet/food and behavior for self-care practice, diet/food under the received self-care guidance; Endocrine, nutritional and metabolic diseases were associated with gender, family history, physiology and unawareness of NCDs, chicken consumption, non-compliance to any dietary guidelines, amount of medication, non-compliance to any self-care practice; emotional and behavioral aspects were associated with self-care deficits, Diet/Food with received self-care guidance; Osteomuscular system and connective tissue diseases were associated with age, income, number of meals, amount of medication and ease on the self-care practice. ADLs were statistically associated with age, schooling, health status self-assessment, health care center visits, fruit intake, non-compliance to any self-care practice, financial and physical aspects, and ease on self-care. As for the IADLs, they were statistically associated with age, schooling, occupational status, individual and family income, Body Mass Index (BMI), fruit intake, alcoholism, exercising, physical aspects for self-care deficits, Diet/food in the received self-care guidance, instrumental and material dimensions for social support. Social support dimensions evidenced statistical association between the instrumental and the family arrangement, number of residents; the emotional social support dimension was associated with age and schooling; the material dimension with nervous system diseases; positive social interaction with age, schooling, family arrangement and eye-related diseases. Conclusion: Due to the obtained results in this study, we recognize the importance of the healthcare professionals from the referred Primary Health Care Center in the issues regarding the knowledge of self-care practices, as well as the social support promoted by the family on the treatment approach and follow up to the Indigenous individual suffering from a Non-Communicable Disease.

Introduction: This research investigated the requirements of an HIT solution that is usable and useful to informal caregivers of cancer patients on home palliative care. Methodology: A needs assessment method was used with an exploratory and a confirmatory stage. Eight semi-structured interviews and two focus groups were used for data collection. Qualitative content analysis was used to analyse caregiver experiences with both inductive and deductive coding. Results/Discussion: Expressed and unexpressed caregiver needs were extracted into four categories, Implementation, Presentation, Information, and Practical Caregiving, and used to create the application requirements. Five user personas were created based on caregiving intensity and the functional level of the patients, a method of tailoring the application content to the different personas was created, and a low-fidelity prototype of the application was designed. Conclusion: The findings of this research can improve the preparedness and coping of informal caregivers of cancer patients on home palliative care.

Background: Information Communication Technologies (ICT)-mediated support can reduce family caregiver burden and may bridge service gaps caused by time constraints and language or cultural barriers. (Non)-usage behaviour can be explained using Andersen’s Behavioural Model of Health Service Utilization, Venkatesh’s Unified Theory of Use and Acceptance of Technology, Eysenbach’s Law of Attrition, and Wilson’s and Chatman’s Information Behaviour Theories. Purpose: This study aimed to describe and explain (non)-usage behaviour of ehealth services among Chinese caregivers. Method: This two-phase study used a mixed methods design involving 46 Chinese caregivers who cared for a family member with dementia. Usability of the ICT tools designed in the study was tested. Phase I participants (N=28) had access to a bilingual information site and personalized email support from professionals. Phase II participants (N=18) were randomized to use one of three enhanced features. Pre- and post-intervention data were collected, and qualitative interviews were conducted. Results: The Phase I ICT tools supported the core functions without major usability issues. Perceived efforts to use the ICT-mediated services influenced the consent decisions of Phase I caregivers (p=.036). Caregivers initiated service earlier if they had a higher acceptance of the service (p=0.017). Frequent users of email support experienced a decline of perceived burden compared with an escalation of perceived burden by non-users (p=0.023). An older age, greater caregiving competence, and lower English or computer proficiency explained non-usage behaviour. Requirements were identified to enhance the Phase I ICT tools. In Phase II, a test of three enhanced features showed there was no major usability issue. The intervention study found the enhanced features did not influence email use as hypothesized. Qualitative analysis showed usage patterns were explained by caregiver needs, caregiving beliefs, personal capacity, social support, ICT factors, and style of use. Non-users preferred Chinese to English compared with users (p=0.046). Integrating the theories and empirical findings, three concepts were developed to explain (non)-usage behaviour: usage in context, usage paths, and stages of use. Conclusion: Usage and non-usage behaviour can be explained by the service needs in the caregiving context, the use of non-ICT-mediated resources, and the access barriers to Internet use. Use of ICT-based support can be beneficial to caregivers if they do not drop out of the service.

Background: Information Communication Technologies (ICT)-mediated support can reduce family caregiver burden and may bridge service gaps caused by time constraints and language or cultural barriers. (Non)-usage behaviour can be explained using Andersen’s Behavioural Model of Health Service Utilization, Venkatesh’s Unified Theory of Use and Acceptance of Technology, Eysenbach’s Law of Attrition, and Wilson’s and Chatman’s Information Behaviour Theories. Purpose: This study aimed to describe and explain (non)-usage behaviour of ehealth services among Chinese caregivers. Method: This two-phase study used a mixed methods design involving 46 Chinese caregivers who cared for a family member with dementia. Usability of the ICT tools designed in the study was tested. Phase I participants (N=28) had access to a bilingual information site and personalized email support from professionals. Phase II participants (N=18) were randomized to use one of three enhanced features. Pre- and post-intervention data were collected, and qualitative interviews were conducted. Results: The Phase I ICT tools supported the core functions without major usability issues. Perceived efforts to use the ICT-mediated services influenced the consent decisions of Phase I caregivers (p=.036). Caregivers initiated service earlier if they had a higher acceptance of the service (p=0.017). Frequent users of email support experienced a decline of perceived burden compared with an escalation of perceived burden by non-users (p=0.023). An older age, greater caregiving competence, and lower English or computer proficiency explained non-usage behaviour. Requirements were identified to enhance the Phase I ICT tools. In Phase II, a test of three enhanced features showed there was no major usability issue. The intervention study found the enhanced features did not influence email use as hypothesized. Qualitative analysis showed usage patterns were explained by caregiver needs, caregiving beliefs, personal capacity, social support, ICT factors, and style of use. Non-users preferred Chinese to English compared with users (p=0.046). Integrating the theories and empirical findings, three concepts were developed to explain (non)-usage behaviour: usage in context, usage paths, and stages of use. Conclusion: Usage and non-usage behaviour can be explained by the service needs in the caregiving context, the use of non-ICT-mediated resources, and the access barriers to Internet use. Use of ICT-based support can be beneficial to caregivers if they do not drop out of the service.