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1.
Health Info Libr J ; 40(1): 54-69, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-35396806

RESUMO

BACKGROUND: Caregivers of children may rely on internet sources, health care providers, peers or family for health information. OBJECTIVE: To examine the impact of sociodemographic factors on the use of the internet for health information by caregivers of children, and the impact on self-efficacy, effort and frustration. METHODS: Using data from the 2019 Health Information National Trends Survey, the effects of information source on self-efficacy, effort and frustration was examined using the complex samples module of SPSS. RESULTS: The internet was the most common source of health information for caregivers of children (n = 247), with high confidence, low frustration and effort reported. Younger, higher educated and higher income caregivers were significantly more likely to use the internet for health information. Information from Health Care Providers (HCPs) was associated with greater confidence, and information from peers associated with lesser effort and frustration. No significant effects on self-efficacy, effort or frustration for online health information was noted compared to other sources. CONCLUSIONS: Efforts to reduce barriers to online health information may be required for some groups of caregivers, and health care providers may have a role to play in this.


Assuntos
Cuidadores , Comportamento de Busca de Informação , Humanos , Criança , Pessoal de Saúde , Inquéritos e Questionários , Internet
2.
Psychooncology ; 31(10): 1621-1636, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-35996330

RESUMO

OBJECTIVE: Connected health technologies have the potential to improve access to cancer care and support and reduce costs. We aimed to assess the impacts of interventions delivered using connected health technologies on psychological and quality of life (QoL) outcomes in people living with and beyond cancer. METHODS: PUBMED, PsycINFO, Web of Science, and EMBASE were searched using terms relating to (i) cancer, (ii) connected health, and (iii) QoL/psychological wellbeing. Studies were included if they evaluated interventions using connected health technologies and assessed psychological and/or QoL outcomes for adults at any stage of cancer treatment or survivorship. RESULTS: Thirty-seven studies met the inclusion criteria with a total of 8956 participants. Connected health technologies included web-based applications (n = 24), smart applications (n = 12), and wearable devices (n = 1). Studies were heterogeneous in terms of intervention components. We identified five clusters: (i) Psychosocial support and rehabilitation, (ii) psychoeducation and information support, (iii) symptom monitoring, reporting and self-management, (iv) peer and social support, and (v) health coaching and physical activity training. Due to heterogeneity of outcome measures, the meta-analysis included only seven RCTs; pooled mean estimates showed connected health interventions were moderately effective in reducing symptoms of depression (SMD: -0.226, 95% CI -0.303/-0.149) and anxiety (SMD: -0.188, 95% CI: 0.279/-0.0963) compared with usual care. CONCLUSION: While the considerable heterogeneity observed highlights the need for more rigorous studies to improve reproducibility and efficiency, results suggest that connected health interventions have the potential to improve psychological wellbeing and QoL outcomes in people living with and beyond cancer.


Assuntos
Neoplasias , Qualidade de Vida , Adulto , Ansiedade/terapia , Transtornos de Ansiedade , Humanos , Neoplasias/psicologia , Reprodutibilidade dos Testes
3.
Support Care Cancer ; 30(8): 6755-6766, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-35524147

RESUMO

AIM: As healthcare systems are increasingly burdened, the efficiencies and cost savings offered by connected health (CH, i.e. two-way communicative healthcare technologies such as eHealth or mHealth) present an attractive solution for supporting families impacted by cancer. More research is required, however, to examine attitudes towards CH to better facilitate its use in practice. This study seeks to examine the utility, barriers and facilitators of CH use for families affected by paediatric cancer living in Ireland. METHODS: Healthcare professionals (n = 5) and parents of children with cancer (n = 7) completed semi-structured interviews on their experiences of and attitudes to CH via Microsoft Teams. A reflexive thematic approach to analysis was employed. RESULTS: CH was perceived to provide support for a number of current needs with themes of 'shifting responsibilities', 'individualisation of care' and 'knowledge as power'. Through facilitating communication, information sharing and monitoring of child health, CH was perceived to support decreased parental burden and increased parental control, with positive child outcomes thought likely. Perceived barriers and facilitators to the use of CH included the 'importance of trust', 'pace of change' and 'access'. CONCLUSION: While results suggest an acceptance of CH across key stakeholders, barriers and facilitators should be considered to support effective implementation. While further analysis of the efficacy of CH to support families impacted by paediatric cancer is needed, these findings highlight key areas where CH may be effectively employed.


Assuntos
Neoplasias , Pais , Criança , Comunicação , Pessoal de Saúde , Humanos , Neoplasias/terapia , Relações Pais-Filho , Pesquisa Qualitativa
4.
J Psychosoc Oncol ; 40(1): 1-25, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-33191874

RESUMO

PROBLEM IDENTIFICATION: Expanding on previous work in specific cancer populations, this review aimed to explore factors associated with decisional regret following treatment for a range of cancer types. LITERATURE SEARCH: A systematic search of four databases identified 1747 studies, using search terms relating to cancer survivors and decisional regret. Following quality appraisal, correlates of regret were abstracted and analyzed using narrative synthesis. DATA EVALUATION/SYNTHESIS: Seventy-two studies met the inclusion criteria. Factors associated with treatment regret were categorized as being either modifiable or less modifiable. Regret was associated with various sociodemographic factors, physical health, treatment type, an unsatisfactory decision-making process, poorer mental health and lack of social support. CONCLUSION: Results highlight the complex nature of regret and illustrate how this can be experienced following a range of cancer treatments. As regret can be an obstacle to full-recovery from cancer, this review suggests some ways in which the emergence of regret may be mitigated.


Assuntos
Sobreviventes de Câncer , Neoplasias , Tomada de Decisões , Emoções , Humanos , Neoplasias/terapia , Fatores Sociodemográficos
5.
Psychooncology ; 30(1): 3-15, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-32893415

RESUMO

OBJECTIVES: Families impacted by paediatric cancer are met with logistical, financial and psychological impacts, with severe acute respiratory syndrome coronavirus two creating additional barriers and stressors for these families. Connected Health (CH) may facilitate cancer care. The objective of the present study was to systematically review CH for families/informal caregivers affected by paediatric cancer. METHODS: Using search terms relating to: (1) paediatric cancer, (2) family/caregivers and (3) CH, the databases of PsycINFO, Pubmed, EMBASE and Web of Science were searched. Inclusion criteria included an evaluation of CH technologies for supportive care for families/caregivers affected by paediatric cancer at any stage of treatment or survivorship. RESULTS: Sixteen studies met inclusion criteria. CH was primarily web-based (n = 6), however smartphone applications (n = 5), telehealth (n = 2) and online groups (n = 3) were utilised. Intervention areas included psycho-social (n = 6), health and information provision (n = 8) and palliative care (n = 2). CONCLUSIONS: While limited studies have evaluated the impact of CH on families living with paediatric cancer, emerging evidence suggests potential benefits. More evidenced-based interventions are required.


Assuntos
Cuidadores/psicologia , Aconselhamento , Neoplasias/terapia , Qualidade de Vida/psicologia , Apoio Social , Telemedicina/métodos , Adulto , Criança , Promoção da Saúde , Humanos , Neoplasias/psicologia , Pais , Pediatria
6.
Curr Neurol Neurosci Rep ; 20(7): 18, 2020 05 22.
Artigo em Inglês | MEDLINE | ID: mdl-32444986

RESUMO

PURPOSE OF REVIEW: In spite of recent advances in treatment, many people with multiple sclerosis (MS) require ongoing care and support. Informal caregivers can experience burden as a result of their role, with possible implications for quality of life (QOL). We review recent research examining MS caregiver experience to (1) understand current risk factors for caregiver burden and (2) identify possible strategies for increasing carer well-being. RECENT FINDINGS: MS caregiver experience is highly variable and can be predicted by a variety of care recipient, caregiver and contextual factors. Burden is not the only characteristic associated with care, with positive consequences also reported. Emerging research suggests a number of ways in which carers can be better supported. Identifying and meeting the needs of MS caregivers offers the best way of delivering tailored support. Future research should focus on the development of psychosocial supports, while acknowledging the needs of those caring for different MS patient populations.


Assuntos
Esclerose Múltipla , Qualidade de Vida , Sobrecarga do Cuidador , Cuidadores , Humanos , Esclerose Múltipla/terapia
7.
Support Care Cancer ; 27(9): 3365-3373, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-30627919

RESUMO

PURPOSE: This study aimed to investigate the prevalence of sleeping problems in prostate cancer survivors and to explore the role of predisposing, precipitating and perpetuating factors in this process. METHODS: Using a cross-sectional design, 3348 prostate cancer survivors between 2 and 18 years post diagnosis reported experiences of insomnia using the QLQC30, along with their sociodemographic characteristics, health status and treatment(s) received. The EQ5D-5L and QLQPR25 assessed survivors' overall and prostate cancer-specific health-related quality of life. A hierarchical multiple regression analysis was constructed with three blocks: (1) predisposing (e.g. demographics at diagnosis), (2) precipitating (e.g. disease extent, treatment) and (3) perpetuating factors (e.g. side effects). RESULTS: Nineteen percent of survivors reported significant problems sleeping. The final model accounted for 31% of the variance in insomnia scores (p < .001). In order of magnitude, associates of sleep disturbance were urinary symptoms (ß = 0.22; p < .001), experiencing symptoms of depression/anxiety (ß = 0.18; p < .001), hormone treatment-related symptoms (ß = 0.12; p = .001), pain (ß = 0.10; p < .001) and bowel symptoms (ß = 0.06; p = .005). Having a lower education and more comorbidities at diagnosis also predicted sleep problems. CONCLUSION: Results suggest that it is the ongoing adverse effects of prostate cancer and its treatment (e.g. urinary symptoms) that put survivors most at risk of sleep problems. Strong associations with symptoms of depression/anxiety were also observed. Findings highlight the need for health care practitioners to treat and manage adverse effects of prostate cancer treatment in order to mitigate sleep disturbance in survivors.


Assuntos
Sobreviventes de Câncer/psicologia , Depressão/psicologia , Dor/epidemiologia , Neoplasias da Próstata/fisiopatologia , Qualidade de Vida/psicologia , Distúrbios do Início e da Manutenção do Sono/epidemiologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Comorbidade , Estudos Transversais , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Prevalência , Neoplasias da Próstata/terapia , Fatores de Risco , Distúrbios do Início e da Manutenção do Sono/fisiopatologia
8.
Qual Life Res ; 28(8): 2135-2146, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-30715685

RESUMO

PURPOSE: The burden of caring for a family member or friend can have a negative impact on caregiver health and well-being, yet caring can also have positive consequences. Understanding the factors that may enhance caregiver well-being is merited. METHODS: We used data gathered from the European Quality of Life Survey (EQLS). Using complete case analysis followed by multiple imputation analysis, a series of multilevel regression models were developed to systematically explore the role of three distinct blocks of factors in predicting caregiver well-being as measured by the WHO-5 well-being index: (1) sociodemographic and health factors, (2) care and burden-related factors, and (3) psychological and social appraisals. Differences between frequent caregivers and the general population were also compared on all measures. RESULTS: 36,908 respondents took part in EQLS, with 4171 (11%) identifying as frequent carers. While frequent caregivers reported lower well-being compared to the remaining population, most were happy with the amount of time spent caring. Our model explained approximately 32% of variance in well-being scores. After examining the role of known risk factors, all positive psychological appraisals were associated with higher well-being (p < .001). In order of magnitude these were optimism, perceived autonomy, sense of purpose, resilience, and perceived levels of social inclusion. Self-rated health was the strongest predictor of well-being while female carers and those with high levels of various burden measures reported lower well-being. CONCLUSIONS: Findings suggest that caregiver well-being is influenced by more than simply the burden of care. As well as attempting to reduce burden, interventions aimed at supporting caregivers could focus on fostering more positive appraisals to enhance well-being in this group.


Assuntos
Adaptação Psicológica , Cuidadores/psicologia , Família/psicologia , Qualidade de Vida/psicologia , Idoso , Europa (Continente) , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Fatores de Risco , Inquéritos e Questionários
9.
Int J Transgend ; 20(4): 421-433, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-32999627

RESUMO

Background: While there is growing awareness of the need to support the physical and mental wellbeing of transgender people, some may be reluctant to seek help from healthcare professionals. Little is understood about the mechanisms that influence help-seeking behavior in this group. Aims: This study aimed to compare transgender and cisgender participants in their likelihood to seek help for both physical and mental health conditions, and to explore whether this help-seeking behavior is predicted by a range of sociodemographic and psychological variables. Methods: 123 participants living in Ireland (cisgender= 67; transgender= 56) completed a questionnaire which included demographic questions, as well as measures of optimism (LOT-R), self-esteem (RSES), psychological distress (GHQ-12), attitudes towards seeking psychological help (ATSPPH-SF), and attitudes towards seeking help for a physical health problem (Attitudes Towards Seeking Medical Help Scale- Action/Intervention subscale). Associations between predictor variables and mental and physical health seeking were explored using correlation analysis and stepwise regressions. Results: Transgender participants were less likely to seek help for a physical health issue than cisgender participants, but did not differ in mental health help-seeking behaviors. Results suggest that this may be due to differences in optimism, self-esteem and psychological distress. Transgender participants had significantly lower optimism and self-esteem, which were two factors linked to poorer physical health seeking behaviors. Optimism also emerged as a significant predictor in mental health seeking behaviors. Discussion: The lack of a significant difference for mental health help-seeking between the transgender and cisgender participants is encouraging, as it suggests that there is less stigma surrounding mental illness than expected, however findings also contradict previous findings suggesting that physical health is less stigmatized. This could be due to stigma relating to gender-specific healthcare and suggests that healthcare professionals should acknowledge the specific healthcare needs and concerns among transgender individuals.

11.
Psychooncology ; 27(4): 1237-1243, 2018 04.
Artigo em Inglês | MEDLINE | ID: mdl-29430755

RESUMO

OBJECTIVE: Despite a generally good prognosis, many prostate cancer survivors have poor quality of life (QOL). A greater understanding of how psychological appraisals influence QOL is merited given their potentially modifiable nature. In this study, we considered how elements of survivors' retrospective and prospective appraisals relate to QOL. METHODS: A total of 1229 prostate cancer survivors between 2 and 5 years post-diagnosis, identified from a population-based National Cancer Registry, were asked questions on their socio-demographics, health, treatment received, and adverse-effects using a cross-sectional design. QOL was assessed using the EORTC QLQ-C30. Retrospective appraisals were assessed by asking survivors to reflect on their experience of treatment-related adverse-effects compared with their prior expectations. A fear of recurrence scale assessed prospective appraisals of future disease course. A multiple regression model explored the impact of psychological appraisals on QOL, after controlling for socio-demographic, treatment, and health-related factors. RESULTS: The model was significant explaining 37% of variance in QOL. The strongest associate with QOL was fear of recurrence (ß = -.29; P < .001). Survivors who experienced side effects that were worse than expected had significantly lower QOL (ß = -.10; P = .002). Other significant correlates of lower QOL were presence of comorbidities, having undergone a less invasive treatment, and having more advanced disease. Working at diagnosis and having a higher level of education were significantly associated with higher QOL. CONCLUSIONS: Results suggest both retrospective and prospective appraisals are independently related to QOL in prostate cancer. Providing survivors with more information about possible adverse effects of treatment, as well as providing appropriate information regarding future disease progression, may improve QOL.


Assuntos
Sobreviventes de Câncer/psicologia , Neoplasias da Próstata/psicologia , Qualidade de Vida , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Medo/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Motivação , Estudos Prospectivos , Estudos Retrospectivos
12.
Psychooncology ; 27(9): 2165-2171, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-29852528

RESUMO

OBJECTIVE: To estimate the prevalence of financial objective stress and subjective strain among colorectal cancer survivors and assess associated financial coping factors in Ireland, which has a mixed public-private health care system. METHODS: Colorectal cancer survivors were identified from the National Cancer Registry, and a sample of 496 respondents were included in the analysis. A postal survey collected information on survivor demographics, socio-economic background, medical characteristics, cancer-related financial hardship, debt accumulation, and asset depletion. Cancer-related financial objective stress and subjective strain were used as dependent variables in logistic regression analysis. RESULTS: Approximately 2 in 5 survivors experienced objective stress (40.9%) or subjective strain (39.4%). Depletion of savings (49.1%) was the most prevalent form of financial coping strategy. Factors significantly associated with increased objective stress were having a stoma (OR = 2.1; 95% CI, 1.1-3.9), using savings (OR = 9.4; 95% CI, 4.9-18.0), formally borrowing money (OR = 3.1; 95% CI, 1.0-9.6), and loans from family members/friends (OR = 3.8; 95% CI, 1.9-7.8). Not working (excluding retirees) (OR = 0.44; 95% CI, 0.20-0.96) was associated with decreased objective stress. Significant predictors of subjective strain included having dependents, a stoma, using savings (OR = 5.3; 95% CI, 2.9-9.5), and loans from family members/friends (OR = 2.0; 95% CI, 1.1-3.9) but excluded borrowing money. CONCLUSIONS: Cancer-related financial objective stress and subjective strain are common in colorectal cancer survivors, even where all citizens are entitled to publicly funded care, but the financial coping strategies significantly associated with these 2 measures differed. These findings will help inform targeted measures across disparate health care systems and survivor groups to alleviate financial hardship.


Assuntos
Sobreviventes de Câncer/psicologia , Neoplasias Colorretais/economia , Neoplasias Colorretais/psicologia , Efeitos Psicossociais da Doença , Qualidade de Vida/psicologia , Sobrevivência , Adaptação Psicológica , Adulto , Idoso , Atenção à Saúde , Feminino , Humanos , Renda , Irlanda/epidemiologia , Masculino , Prevalência , Fatores Socioeconômicos , Inquéritos e Questionários
13.
Psychooncology ; 26(11): 1825-1831, 2017 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-28124398

RESUMO

OBJECTIVE: Fear of recurrence (FOR) is a key concern among survivors of all cancers. In prostate cancer, FOR varies with health and treatment type, but little is known about how survivors' appraisals of their treatment, and in particular, their level of regret over treatment decisions may affect this. METHODS: A total of 1229 prostate cancer survivors between 2- and 5-years postdiagnosis were invited to complete a postal questionnaire including a FOR scale, Decisional Regret Scale, and the European Organization for Research and Treatment of Cancer QLQ C30 health-related quality of life (HRQoL) instrument. Multiple regression analysis explored the impact of 3 blocks of factors on FOR: (1) demographic characteristics and disease extent, (2) primary treatment received and health status (treatment side effects and HRQoL), and (3) treatment appraisals, specifically satisfaction with information received regarding treatment and level of regret experienced over treatment decisions. RESULTS: The final multivariable model explained 27% of variance on FOR. Significant correlates of lower FOR included having localised disease, having undergone an invasive treatment, as well as health status (higher HRQoL and fewer ongoing side effects). Beyond this, appraisals of treatment significantly contributed to the model: More decisional regret and lower satisfaction with information received were associated with higher FOR. CONCLUSION: These findings suggest that FOR may be mitigated by providing survivors with more information regarding treatment choices and the treatment itself so that men can make well-informed decisions and experience less future regret. Sensitivity analysis for variables predicting FOR among prostate cancer survivors is not suspected of having a recurrence.


Assuntos
Sobreviventes de Câncer/psicologia , Comportamento de Escolha , Tomada de Decisões , Emoções , Medo , Recidiva Local de Neoplasia/psicologia , Neoplasias da Próstata/psicologia , Neoplasias da Próstata/terapia , Idoso , Nível de Saúde , Humanos , Irlanda , Masculino , Pessoa de Meia-Idade , Prostatectomia/psicologia , Neoplasias da Próstata/patologia , Qualidade de Vida , Inquéritos e Questionários
14.
Nurs Res ; 66(4): 295-303, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28654567

RESUMO

BACKGROUND: Fear of recurrence (FOR) is a primary concern for both cancer survivors and their caregivers, yet little is known about what care-related factors exacerbate this worry. OBJECTIVES: This study aimed to establish the role of care-related stressors-as distinct from survivor characteristics-in predicting FOR in head and neck cancer caregivers. METHODS: HNC survivor-caregiver dyads took part in a mailed survey. Survivors provided information on health and quality of life (using the Functional Assessment of Cancer Therapy Questionnaire). Caregivers provided sociodemographic information, impact of caring on their time and finances, as well as their level of social support (Oslo Support Scale), loneliness (3-point loneliness scale), and completed the Worry of Cancer Scale (to measure FOR). RESULTS: Data from 180 dyads were available for analysis. Multiple regression analysis was used to examine the role of caregiver stressors, social support, and loneliness while controlling for caregiver and survivor characteristics. The model explained 28% of the variance in Worry of Cancer scores (FOR). Caregivers who reported more loneliness, spent more time caring, and had greater financial stress from caring had higher scores on Worry of Cancer (FOR). Female caregivers, those caring for younger survivors, and those with survivors who had undergone less extensive forms of surgery also reported higher FOR. DISCUSSION: A combination of factors place caregivers at greater risk of cancer-related worry, paving the way for designing interventions aimed at reducing FOR in caregivers of patients with head and neck cancers.


Assuntos
Cuidadores/psicologia , Neoplasias de Cabeça e Pescoço/enfermagem , Neoplasias de Cabeça e Pescoço/psicologia , Recidiva Local de Neoplasia/psicologia , Qualidade de Vida/psicologia , Sobreviventes/psicologia , Adulto , Ansiedade , Medo , Feminino , Humanos , Solidão , Masculino , Pessoa de Meia-Idade , Estresse Psicológico , Inquéritos e Questionários
15.
Support Care Cancer ; 24(10): 4283-91, 2016 10.
Artigo em Inglês | MEDLINE | ID: mdl-27185021

RESUMO

PURPOSE: Our study aimed to investigate the relationship between unmet supportive care needs and carer burden and happiness, in head and neck cancer (HNC). METHODS: Two hundred eighty-five HNC informal carers were sent a postal questionnaire between January and June 2014, which included the supportive care needs survey for partners and caregivers of cancer survivors (SCNS-P&C) and the CarerQol, which assesses burden and happiness. Multiple regression analysis was conducted to examine the association of (i) carer characteristics, (ii) carer situation, and (iii) unmet supportive care needs, with carer burden and happiness RESULTS: One hundred ninety-seven carers completed the questionnaire (response rate = 69 %), 180 of whom were included in the analysis. The majority were female (76 %), not in paid employment (68 %) and caring for their spouse (67 %). On average, carers reported relatively low levels of burden and relatively high levels of happiness. Carer factors explained 42 % of variance in levels of burden and 24 % of variance in levels of happiness. Healthcare service needs were associated with carer burden (ß = .28, p = .04), while psychological needs (ß = -.38, p = .028), health care service needs (ß = -.30, p = .049), information needs (ß = .29, p = .028), carer comorbidity (ß = -.18, p = .030), and gender (ß = -.16, p = .045) were associated with happiness. CONCLUSIONS: Our results indicate that different aspects of carer characteristics and unmet needs are associated with carer burden and happiness. Efforts directed at reducing unmet healthcare service needs in particular are merited given their associations with both aspects of carer quality of life.


Assuntos
Cuidadores/psicologia , Neoplasias de Cabeça e Pescoço/terapia , Qualidade de Vida/psicologia , Adaptação Psicológica , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Felicidade , Neoplasias de Cabeça e Pescoço/mortalidade , Necessidades e Demandas de Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Sobreviventes , Adulto Jovem
16.
J Clin Nurs ; 25(15-16): 2317-27, 2016 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-27161808

RESUMO

AIMS AND OBJECTIVES: To identify and describe the triggers of emotional distress among long-term caregivers (more than 1 year postdiagnosis) of people with head and neck cancer. BACKGROUND: Limited research has been conducted on the factors that cause head and neck cancer caregivers to become distressed. DESIGN: Qualitative cross-sectional. METHODS: In-depth semi-structured interviews. Interviews were conducted via telephone. The study setting was the Republic of Ireland. RESULTS: Interviews were conducted with 31 long-term caregivers (mean time since diagnosis 5·7 years, SD 2·9 years). Head and neck cancer caregivers experienced significant distress. Six key triggers of emotional distress were identified: understandings and fears of illness, lifestyle restrictions and competing demands, facial disfigurement, financial problems, comorbid health problems and witnessing suffering. Cutting across all of these individual causes of distress was a strong feeling of loss caused by head and neck cancer. CONCLUSIONS: Some head and neck cancer caregivers became considerably distressed by their caring role. Although distress appears to decline with time for many caregivers, some continue to be distressed for years following the patient's diagnosis. It would be useful for future research to explicitly investigate caregivers' experiences of loss. RELEVANCE TO CLINICAL PRACTICE: Health professionals may be able to reduce distress in this group if they can help caregivers to access resources that can be used to buffer financial problems. Health professionals may also be able to reduce distress if they can work with caregivers to help them to obtain something of personal value or significance from their experience of loss and suffering.


Assuntos
Cuidadores/psicologia , Emoções , Neoplasias de Cabeça e Pescoço/terapia , Estresse Psicológico/etiologia , Adulto , Idoso , Estudos Transversais , Feminino , Neoplasias de Cabeça e Pescoço/psicologia , Humanos , Irlanda , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Inquéritos e Questionários , Telefone
17.
Support Care Cancer ; 23(7): 1941-9, 2015 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-25504527

RESUMO

PURPOSE: Our aim was to investigate associations between the subjective burden of care and health-related quality of life (both physical and mental) within colorectal cancer patient carers in Ireland, with supplementary analysis of carer objective factors. METHODS: Two hundred twenty-eight colorectal cancer informal carers were sent a postal questionnaire between August 2010 and March 2011 which included the Caregiver Reaction Assessment (CRA) and the SF-12v2. Multiple regression analysis assessed whether five CRA domains (family support, finances, schedule, health and esteem) predicted carer mental or physical health. Between-group comparisons investigated differences in these domains across objective factors. RESULTS: One hundred fifty-three carers (82% female) completed the questionnaire (response rate = 68%). Carers' mean physical component summary (PCS) was 48.56 (SD = 10.38) and mean mental component summary (MCS) was 49.22 (SD = 9.7). Five CRA factors explained 30% of variance in the PCS score and 28% of variance in the MCS score. Health burden (ß = -.76, p < .001) and schedule burden (ß = .28, p = .01) were significant predictors of PCS. MCS was significantly predicated by financial burden (ß = -.24, p = .01) and esteem (ß = -.18, p = .03). Younger carers, spouses, those with a comorbid condition and those with no income change had significantly lower PCS. There were no statistically significant group differences for carer mental health. CONCLUSIONS: Our results demonstrate the need to recognise the distinctive aspects of the impact of caring (i.e., physical and mental) on carers and that different domains of subjective carer burden and objective factors impact differently on each of these. This has important implications for those delivering support to carers over the course of the survivorship continuum.


Assuntos
Cuidadores/psicologia , Neoplasias Colorretais/psicologia , Efeitos Psicossociais da Doença , Neoplasias Colorretais/economia , Neoplasias Colorretais/terapia , Feminino , Humanos , Irlanda , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Cônjuges/psicologia , Inquéritos e Questionários
18.
Work ; 2024 May 13.
Artigo em Inglês | MEDLINE | ID: mdl-38759087

RESUMO

BACKGROUND: Increasing levels of distress and barriers to healthcare have coincided with increasing use of Complementary and Alternative Medicine (CAM). While mindfulness and movement interventions may improve wellbeing, little research has compared the effectiveness of these two approaches. OBJECTIVE: This single intervention study aimed to (1) explore the effects of two brief, online, self-administered mindfulness and movement interventions on affect and vitality, and (2) establish whether changes in affect and vitality could be predicted by age, gender, general distress, previous CAM experience and enjoyment of the intervention. METHODS: Participants (n = 62) were randomly allocated to follow a brief online mindfulness or movement intervention. Levels of affect (using PANAS) and subjective vitality (using the Subjective Vitality Scale) were measured pre and post intervention. Demographics, experience with CAM and general distress (using the DASS-21) were collected pre intervention, while level of enjoyment (using the ENJOY scale) was measured post intervention. Open-text responses gathered qualitative data on participant experience. RESULTS: Participants completing the mindfulness intervention reported increased vitality and decreased positive and negative affect. Those completing the movement intervention reported increased vitality and positive affect and decreased negative affect. Higher DASS-21 levels were predictive of greater reductions in negative affect. Higher levels of enjoyment were predictive of greater increases in positive affect and vitality. CONCLUSIONS: Differences between mindfulness and movement interventions may indicate that they could have targeted applications. While further research is necessary, these brief, online interventions may provide a sustainable, accessible self-management and wellbeing intervention.

19.
J Cancer Surviv ; 2024 May 14.
Artigo em Inglês | MEDLINE | ID: mdl-38744797

RESUMO

PURPOSE: As the number of people living with and beyond cancer increases, connected health technologies offer promise to enhance access to care and support, while reducing costs. However, uptake of connected health technologies may vary depending on sociodemographic and health-related variables. This study aimed to investigate demographic and health predictors of connected health technology use among people living with and beyond cancer. METHODS: Cross-sectional data from the US Health Information National Trends Survey Version 5 Cycle 4 (H5c4) was used. Regression analysis was used to examine associations between sociodemographic factors and the use of connected health technologies. The sample was restricted to individuals who self-reported a cancer diagnosis or history of cancer. RESULTS: In this cycle, 626 respondents self-reported a cancer diagnosis, with 41.1% using connected health technologies (health and wellness apps and/or wearable devices). Most were female (58.9%) and white (82.5%); 43.4% had graduated college or higher education. One third (33.6%) had a household income of $75,000 or more. Respondents who were younger, have higher education, were living as married, had higher incomes, had higher self-rated health and had higher health-related self-efficacy were significantly more likely to use connected health technologies. There were no significant associations between gender, race, stratum, time since diagnosis, history of anxiety or depression, and use of connected health technologies among people living with and beyond cancer. CONCLUSIONS: Connected health technology use among people living with and beyond cancer is associated with sociodemographic factors. Future research should examine these demographic disparities as the use of connected health technologies in healthcare continues to gather momentum. IMPLICATIONS FOR CANCER SURVIVORS: The study underscores a disparity in connected heath technology usage among people living with and beyond cancer. There is a pressing need for research into adoption barriers and interventions to ensure equitable digital healthcare integration among this population, especially with the heightened adoption of technology post COVID-19 pandemic.

20.
J Homosex ; : 1-30, 2024 Mar 21.
Artigo em Inglês | MEDLINE | ID: mdl-38511847

RESUMO

Gay, bisexual, and other men who have sex with men (gbMSM) are disproportionately affected by HIV. While pre-exposure prophylaxis (PrEP) is highly effective at preventing HIV acquisition, uptake of PrEP among gbMSM is low, which may in part be due to stigma associated with PrEP use. This systematic review aimed to explore experiences of PrEP stigma and to identify factors associated with this. Four databases were searched for papers including terms relating to (i) gbMSM, (ii) PrEP, and (iii) stigma, with narrative synthesis used to analyze results. After screening, 70 studies were included in the final analysis. Experiences of PrEP stigma were found to be characterized by a number of stereotypes and came from a range of sources. Five categories of factors were associated with stigma: (i) healthcare-related factors, (ii) cultural and contextual factors, (iii) sociodemographic factors, (iv) peer-discussion, and (v) psychosocial factors. These findings suggest that stigma can be a common experience for gbMSM. However, some are more at risk than others. Interventions aimed at reducing PrEP stigma may be useful in increasing uptake.

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