Your browser doesn't support javascript.
loading
Show: 20 | 50 | 100
Results 1 - 20 de 85
Filter
Add more filters

Publication year range
1.
JMIR Res Protoc ; 13: e52250, 2024 05 31.
Article in English | MEDLINE | ID: mdl-38598816

ABSTRACT

BACKGROUND: Lesbian, gay, bisexual, transgender, intersex, queer, and allied (LGBTQIA+) individuals encounter challenges with access and engagement with health services. Studies have reported that LGBTQIA+ individuals experience stigma, discrimination, and health workers' microaggression when accessing health care. Compelling evidence suggests that the LGBTQIA+ community faces disproportionate rates of HIV infection, mental health disorders, substance abuse, and other noncommunicable diseases. The South African National Strategic Plan for HIV or AIDS, tuberculosis, and sexually transmitted infections, 2023-2028 recognizes the need for providing affirming LGBTQIA+ health care as part of the country's HIV or AIDS response strategy. However, current anecdotal evidence suggests paucity of LGBTQIA+ and key populations' health content in the undergraduate health science curricula in South Africa. Moreover, literature reveals a general lack of health worker training regarding the health needs of LGBTQIA+ persons and other key populations such as sex workers, people who inject drugs, and men who have sex with men. OBJECTIVE: This study aimed to describe the design of a project that aims at facilitating the inclusion of health content related to the LGBTQIA+ community and other key populations in the undergraduate nursing curricula of KwaZulu-Natal, South Africa. METHODS: A multimethods design encompassing collection of primary and secondary data using multiple qualitative designs and quantitative approaches will be used to generate evidence that will inform the co-design, testing, and scale-up of strategies to facilitate the inclusion of LGBTQIA+ and key populations content in the undergraduate nursing curricula in KwaZulu-Natal, South Africa. Data will be collected using a combination of convenience, purposive, and snowball sampling techniques from LGBTQIA+ persons; academic staff; undergraduate nursing students; and other key populations. Primary data will be collected through individual in-depth interviews, focus groups discussions, and surveys guided by semistructured and structured data collection tools. Data collection and analysis will be an iterative process guided by the respective research design to be adopted. The continuous quality improvement process to be adopted during data gathering and analysis will ensure contextual relevance and sustainability of the resultant co-designed strategies that are to be scaled up as part of the overarching objective of this study. RESULTS: The proposed study is designed in response to recent contextual empirical evidence highlighting the multiplicity of health challenges experienced by LGBTQIA+ individuals and key populations in relation to health service delivery and access to health care. The potential findings of the study may be appropriate for contributing to the education of nurses as one of the means to ameliorate these problems. Data collection is anticipated to commence in June 2024. CONCLUSIONS: This research has potential implications for nursing education in South Africa and worldwide as it addresses up-to-date problems in the nursing discipline as it pertains to undergraduate students' preparedness for addressing the unique needs and challenges of the LGBTQIA+ community and other key populations. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/52250.


Subject(s)
Curriculum , Sexual and Gender Minorities , Humans , South Africa , Female , Male , Education, Nursing, Baccalaureate
2.
Nurs Crit Care ; 29(4): 777-784, 2024 07.
Article in English | MEDLINE | ID: mdl-38459751

ABSTRACT

BACKGROUND: Family members of Intensive Care Unit (ICU) patients encounter numerous challenges while providing companionship to their hospitalized loved ones. AIM: This study aims to explore the experiences of family members with loved ones hospitalized in ICUs. STUDY DESIGN: Qualitative research was conducted using a content analysis approach. Ten family members of ICU patients were recruited using purposive sampling. Data were collected through semi-structured, in-depth interviews and analysed following Graneheim and Lundman's suggested steps. FINDINGS: Analysis of interviews with ten family members of ICU patients revealed a theme of "challenging companionship on an obscure path," encompassing four categories (1-4) and nine subcategories (a, b and c). These included (1) the interplay between the patient and the family: a. family affected by the patient's condition; b. patient affected by the family's condition; (2) mixed emotions of apprehension and anticipation regarding ICU admission: a. fear of ICU hospitalization; b. hope for ICU hospitalization; (3) unaddressed needs and concerns: a. pressure from the ICU's visiting limitations; b. lack of a resting room to settle; c. vague information about the patient's condition; (4) two-way care suffering for families a. direct suffering associated with companionship; b. indirect suffering while observing the patients' suffering. CONCLUSIONS: Families of ICU patients encounter various challenges, revealing the complex interplay of emotions, needs and challenges within the ICU. This highlights the intricate dynamics in this critical health care environment. RELEVANCE TO CLINICAL PRACTICE: A holistic and empathetic approach in clinical practice is crucial in ICU care, particularly during the challenging journey patients and their families undergo in this critical setting. Health care systems and providers should adapt ICU rules to address evolving needs, alleviate concerns and enhance the overall family experience during their loved one's hospitalization in the ICU.


Subject(s)
Family , Intensive Care Units , Qualitative Research , Humans , Male , Female , Middle Aged , Family/psychology , Adult , Professional-Family Relations , Aged , Visitors to Patients/psychology
3.
Matern Child Health J ; 28(6): 1010-1019, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38353888

ABSTRACT

OBJECTIVES: In 2018, approximately 2.3 million children in the United States had unmet healthcare needs (UHCN). To date, studies examining associations between UHCN and parent stress and support have had limited generalizability. This study aimed to investigate the relationship between children's UHCN and parenting stress and support using a nationally representative sample. Additionally, this study aimed to assess associations between unmet mental health needs and these parental well-being measures. METHODS: Households with children ages 0-17 and complete data on UHCN in the combined 2016, 2017, 2018, and 2019 cohorts of the National Survey of Children's Health (NSCH) met inclusion criteria. Logistic regressions were used to evaluate associations between overall UHCN and outcome measures of parental coping, aggravation, emotional support, and neighborhood support. Associations between mental UHCN and these outcome measures were analyzed in a subset limited to children with mental health conditions. Regressions were adjusted for potential confounders, including demographics, household income, medical home status, and health insurance (adequacy/type). RESULTS: In our sample of 131,299 children, overall UHCN were associated with poorer parental coping (aOR = 5.35, 95% CI: [3.60, 7.95]), greater parental aggravation (aOR = 3.35, 95% CI: [2.73, 4.12]), and non-supportive neighborhood (aOR = 2.22, 95% CI: [1.86, 2.65]). Mental UHCN were similarly associated with parental coping and aggravation and neighborhood support in the mental health subset. CONCLUSIONS FOR PRACTICE: Healthcare professionals must address the needs of children with UHCN and collaborate with community organizations and child advocates to promote coordinated and comprehensive care and adequately support caregivers.


Subject(s)
Health Services Needs and Demand , Parenting , Social Support , Stress, Psychological , Humans , Female , Male , Child , Stress, Psychological/psychology , Child, Preschool , Parenting/psychology , Adolescent , United States , Infant , Adult , Parents/psychology , Adaptation, Psychological , Infant, Newborn
4.
Womens Health Rep (New Rochelle) ; 5(1): 132-142, 2024.
Article in English | MEDLINE | ID: mdl-38404679

ABSTRACT

Introduction: The population of women involved in criminal legal systems (WICL), a majority of whom are reproductive-aged, has risen steadily in the United States. They contend with numerous barriers to sexual and reproductive health services resulting in high rates of unmet need for contraception and unintended pregnancy. Materials and Methods: This study included 132 non-pregnancy seeking reproductive-aged WICL enrolled in the baseline assessment of the HIV prevention intervention, "Women on the Road to Health" (WORTH). A multivariate generalized linear logistic regression model with robust estimation examined effects of past 6-month intimate partner violence (IPV; sexual and physical/injurious), past 3-month substance use (binge drinking, cannabis, other illegal drug use), and lifetime mental health diagnoses (anxiety, depression, bipolar disorder) on women's unmet need for modern contraception, adjusting for significant demographic and socioeconomic factors. Results: Women who were younger in age (odds ratio [OR]: 0.74; 95% confidence interval [CI]: 0.63-0.88) and reporting lifetime diagnoses of anxiety disorders (OR: 13.64; 95% CI: 2.71-68.34) were significantly more likely to meet the criteria for unmet need for modern contraception. Women with a regular gynecologist (OR: 0.11; 95% CI: 0.01-0.86) reporting lifetime diagnoses of bipolar disorder and past 6-month sexual IPV histories (OR: 0.04; 95% CI: 0.002-0.86) were significantly less likely to meet the criteria for unmet need for modern contraception. Conclusions: Distinct mental health diagnoses and experiences of IPV may uniquely impact unmet need for modern contraception among WICL. These findings emphasize the need for a more nuanced comprehension of these relationships to deliver comprehensive and holistic health services that address the intersecting needs of this population.Trial registration: ClinicalTrials.gov NCT01784809. Registered 6 February 2013.

5.
JMIR Res Protoc ; 13: e54707, 2024 Feb 13.
Article in English | MEDLINE | ID: mdl-38349712

ABSTRACT

BACKGROUND: Lung cancer diagnosis affects an individual's quality of life as well as physical and emotional functioning. Information on survivorship care tends to be introduced at the end of treatment, but early intervention may affect posttreatment adjustment. However, to the best of our knowledge, no study has explored the effect of early information intervention on the return to work, family, and societal roles of lung cancer survivors. OBJECTIVE: We report the study protocol of a comprehensive care prehabilitation intervention designed to facilitate lung cancer survivors' psychological adjustment after treatment. METHODS: A comprehensive care program was developed based on a literature review and a qualitative study of patients with lung cancer and health professionals. The Lung Cancer Comprehensive Care Program consists of educational videos and follow-up visits by a family medicine physician. To prevent contamination, the control group received routine education, whereas the intervention group received routine care and intervention. Both groups completed questionnaires before surgery (T0) and at 1-month (T1), 6-month (T2), and 1-year (T3) follow-up visits after surgery. The primary outcome was survivors' psychological adjustment to cancer 6 months after pulmonary resection. RESULTS: The historical control group (n=441) was recruited from September 8, 2021, to April 20, 2022, and the intervention group (n=350) was recruited from April 22, 2022, to October 17, 2022. All statistical analyses will be performed upon completion of the study. CONCLUSIONS: This study examined the effectiveness of an intervention that provided general and tailored informational support to lung cancer survivors, ranging from before to the end of treatment. TRIAL REGISTRATION: ClinicalTrials.gov NCT05078918; https://clinicaltrials.gov/ct2/show/NCT05078918. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/54707.

6.
Lancet Reg Health Am ; 30: 100662, 2024 Feb.
Article in English | MEDLINE | ID: mdl-38304390

ABSTRACT

Background: In the U.S. and globally, dominant metrics of contraceptive access focus on the use of certain contraceptive methods and do not address self-defined need for contraception; therefore, these metrics fail to attend to person-centeredness, a key component of healthcare quality. This study addresses this gap by presenting new data from the U.S. on preferred contraceptive method use, a person-centered contraceptive access indicator. Additionally, we examine the association between key aspects of person-centered healthcare access and preferred contraceptive method use. Methods: We fielded a nationally representative survey in the U.S. in English and Spanish in 2022, surveying non-sterile 15-44-year-olds assigned female sex at birth. Among current and prospective contraceptive users (unweighted n = 2119), we describe preferred method use, reasons for non-use, and differences in preferred method use by sociodemographic characteristics. We conduct logistic regression analyses examining the association between four aspects of person-centered healthcare access and preferred contraceptive method use. Findings: A quarter (25.2%) of current and prospective users reported there was another method they would like to use, with oral contraception and vasectomy most selected. Reasons for non-use of preferred contraception included side effects (28.8%), sex-related reasons (25.1%), logistics/knowledge barriers (18.6%), safety concerns (18.3%), and cost (17.6%). In adjusted logistic regression analyses, respondents who felt they had enough information to choose appropriate contraception (Adjusted Odds Ratio [AOR] 3.31; 95% CI 2.10, 5.21), were very (AOR 9.24; 95% CI 4.29, 19.91) or somewhat confident (AOR 3.78; 95% CI 1.76, 8.12) they could obtain desired contraception, had received person-centered contraceptive counseling (AOR 1.72; 95% CI 1.33, 2.23), and had not experienced discrimination in family planning settings (AOR 1.58; 95% CI 1.13, 2.20) had increased odds of preferred contraceptive method use. Interpretation: An estimated 8.1 million individuals in the U.S. are not using a preferred contraceptive method. Interventions should focus on holistic, person-centered contraceptive access, given the implications of information, self-efficacy, and discriminatory care for preferred method use. Funding: Arnold Ventures.

7.
Omega (Westport) ; : 302228231225994, 2024 Jan 04.
Article in English | MEDLINE | ID: mdl-38174861

ABSTRACT

Purpose: Few studies examined variables that might explain the link between perceived COVID-19 stress and suicidal ideation. The present study tested a multiple-sequence mediation model with family cohesion, thwarted belongingness, and perceived burdensomeness as mediators. Methods: The current study surveyed 1098 college students in China using questionnaires concerning perceived COVID-19 stress, family cohesion, unmet interpersonal needs, and suicide ideation. Results: Perceived COVID-19 stress was significantly associated with family cohesion, thwarted belongingness, perceived burdensomeness, and suicidal ideation. Family cohesion, thwarted belongingness, and perceived burdensomeness mediated the relationship between perceived COVID-19 stress and suicidal ideation separately. These factors also had multiple sequence-mediated effects between perceived COVID-19 stress and suicidal ideation. Conclusion: The study revealed pathways from perceived COVID-19 stress to suicidal ideation and suggested that interventions to increase family cohesion and reduce one's unmet interpersonal needs were beneficial in decreasing individuals' suicidal ideation.

8.
Arch Phys Med Rehabil ; 105(2): 268-279, 2024 02.
Article in English | MEDLINE | ID: mdl-37541355

ABSTRACT

OBJECTIVE: We aimed to describe the prevalence of unmet rehabilitation needs among a sample of Canadians living with long-term conditions or disabilities during the first wave of the COVID-19 pandemic. DESIGN: Cross-sectional survey. SETTING: Individuals residing in Canada during the first wave of the COVID-19 pandemic. PARTICIPANTS: Eligible participants were Canadians living with long-term conditions or disabilities, 15 years or older living in 1 of the 10 provinces or 3 territories (n=13,487). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: We defined unmet rehabilitation needs as those who reported needing rehabilitation (ie, physiotherapy/massage therapy/chiropractic, speech, or occupational therapy, counseling services, support groups) but did not receive it because of the COVID-19 pandemic. We calculated the national, age, gender, and province/territory-specific prevalence and 95% confidence interval of unmet rehabilitation needs. RESULTS: During the first wave of the pandemic, the prevalence of unmet rehabilitation needs among Canadians with long-term conditions or disabilities was 49.3% (95% confidence interval [CI]; 48.3, 50.3]). The age-specific prevalence was higher among individuals 15-49 years old (55.6%; 95% CI [54.2, 57.1]) than those 50 years and older (46.0%; 95% CI [44.5, 47.4]). Females (53.7%; 95% CI [52.6, 54.9]) had higher unmet needs than males (44.1%; 95% CI [42.3, 45.9]). Unmet rehabilitation needs varied across provinces and territories. CONCLUSIONS: In this sample, almost 50% of Canadians living with long-term conditions or disabilities had unmet rehabilitation needs during the first wave of the COVID-19 pandemic. This suggests that a significant gap between the needs for and delivery of rehabilitation care existed during the early phase of the pandemic.


Subject(s)
COVID-19 , Health Services Needs and Demand , Pandemics , Rehabilitation , Adolescent , Adult , Female , Humans , Male , Middle Aged , Young Adult , Canada/epidemiology , COVID-19/epidemiology , Cross-Sectional Studies , North American People , Prevalence
9.
J Adv Nurs ; 80(5): 1776-1812, 2024 May.
Article in English | MEDLINE | ID: mdl-38018290

ABSTRACT

AIM: This systematic review aimed to identify the needs and preferences for cancer care services among Australian First Nations people. DESIGN: Integrative review. DATA SOURCES: An integrative review was conducted. A wide range of search terms were used to increase the sensitivity and specificity of the searches in electronic databases. Methodological quality assessment, data extraction, was conducted independently by two reviewers, and a narrative synthesis was conducted. RESULTS: Forty-two studies were included. A total of 2965 Australian First Nations adults, both men and women of various ages across the lifespan, were represented; no First Nations children affected by cancer were represented in the studies. Three themes emerged which included: (1) discrimination, racism and trauma, resulting from colonization, directly impacted First National people's cancer care experience; (2) cultural ways of knowing, being and doing are fundamental to how First Nations people engage with cancer care services; and (3) First Nations people need culturally safe person-centred cancer care services that address practical needs. CONCLUSION: Most participants represented in this review experienced discrimination, racism and trauma, resulting from colonization, which directly negatively impacted Aboriginal peoples' cancer care experience. While the Optimal Cancer Pathway (OCP) was launched in Australia several years ago, people with cancer may continue to experience distressing unmet care needs. PATIENT OR PUBLIC CONTRIBUTION: Our team includes both First Nations people, non-First Nations researchers and healthcare professionals with expertise in cancer care. The researchers employed decolonizing restorative approaches to ensure voice, respect, accountability and reciprocity in this review work. IMPLICATIONS FOR NURSING PRACTICE: Members of the multidisciplinary team including nurses and policymakers should reflect on these findings, ensure that they have up-to-date cultural safety training and stand together with Indigenous and non-Indigenous cancer leaders to take proactive steps to stamp out and dismantle oppression in health, and safely implement the OCP.


Subject(s)
Neoplasms , Patient-Centered Care , Male , Adult , Child , Humans , Female , Australia , Neoplasms/therapy
10.
J Adv Nurs ; 80(5): 1732-1749, 2024 May.
Article in English | MEDLINE | ID: mdl-37950373

ABSTRACT

AIM: To summarize the evidence regarding the unmet care needs of women who have undergone breast cancer surgery and identify research gaps. DESIGN: A scoping review. DATA SOURCES: This review entailed a systematic search in EMBASE, Medline via PubMed, CINAHL Complete, APA PsycINFO, Cochrane Library, Web of Science and Scopus (up until 30 July 2023). REVIEW METHODS: This review was guided by Arksey and O'Malley's Framework (2005) and the Preferred Reporting Items for Systematic Reviews and Meta-analysis-Scoping Review extension (PRISMA-ScR). RESULTS: Twenty-five studies that included 4914 participants were retrieved. Fourteen studies employed quantitative designs, eight used qualitative methods, two were mixed-methods studies and one used a qualitative meta-synthesis. Women who have undergone breast cancer surgery experience a wide range of complex and multifaceted unmet care needs. The informational/educational and psychological/emotional domains were the most frequently reported among the identified domains. Meanwhile, the sexual and spiritual/religious beliefs domains remained relatively underexplored. Furthermore, none of the assessment tools used in these studies captured the entirety of the possible domains of unmet care needs. CONCLUSION: Needs assessment should be integrated into the routine care of women who have undergone breast cancer surgery. Interventions should be developed to address the unmet informational/educational and psychological/emotional needs of women. Future studies should employ high-quality mixed-methods approaches to explore women's sexual and spiritual/religious concerns. IMPACT: This review provides a comprehensive overview of the unmet care needs of women who have undergone the breast cancer surgery. These findings will contribute to the development of tailored interventions. This review also informs future studies to explore distinct domains of unmet care needs. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.


Subject(s)
Breast Neoplasms , Humans , Female , Breast Neoplasms/surgery
11.
Semin Oncol Nurs ; 40(1): 151567, 2024 Feb.
Article in English | MEDLINE | ID: mdl-38097413

ABSTRACT

OBJECTIVES: Systemic therapy is the mainstay in advanced breast cancer (ABC), but innovations in radiation oncology have given radiotherapy a crucial role in the treatment of both intracranial and extracranial ABC. Breast cancer specialists include, in addition to medical and clinical oncologists, breast cancer nurses with unique theoretical knowledge and significant clinical experience. This review aims to discuss the function of radiotherapy in ABC and to highlight the role and importance of specialized nursing care for ABC patients receiving radiotherapy. DATA SOURCES: An extensive literature review was conducted on the role of radiotherapy and its implementation in various settings of ABC and the pivotal contribution of nursing practices to the quality of life of these patients, with a particular focus on symptom and side effect management and prevention, education, as well as unmet patient needs. The Advanced Breast Cancer International Consensus Guidelines (ABC-5) were also included. All the above data were combined with the expert and practical considerations of breast cancer specialists within the team. CONCLUSION: The sophisticated application of radiotherapy and the complexity of ABC patient management, concerning symptoms, side effects, and overall well-being necessitate collaborative efforts to optimize patient care. Breast cancer nurses hold a central role in this framework. IMPLICATIONS FOR NURSING PRACTICE: The significance of specialized nursing in contributing to comprehensive patient care for ABC patients treated with radiotherapy outlines the need for extensive training that aims to provide a holistic approach and entails physical, mental, and emotional support and patient and caregiver education.


Subject(s)
Breast Neoplasms , Radiation Oncology , Humans , Female , Breast Neoplasms/radiotherapy , Quality of Life
12.
Transfus Clin Biol ; 31(1): 48-55, 2024 Feb.
Article in English | MEDLINE | ID: mdl-38128605

ABSTRACT

ß-thalassemias are genetic disorders causing an imbalance in hemoglobin production, leading to varying degrees of anemia, with two clinical phenotypes: transfusion-dependent thalassemia (TDT) and non-transfusion-dependent thalassemia (NTDT). Red blood cell transfusions and iron chelation therapy are the conventional treatment options for the management of ß-thalassemia. Currently available conventional therapies in thalassemia have many challenges and limitations. Accordingly, multiple novel therapeutic approaches are currently being developed for the treatment of ß-thalassemias. These strategies can be classified into three categories based on their efforts to address different aspects of the underlying pathophysiology of ß-thalassemia: correction of the α/ß globin chain imbalance, addressing ineffective erythropoiesis, and targeting iron dysregulation. Managing ß- thalassemia presents challenges due to the many complications that can manifest, limited access and availability of blood products, and lack of compliance/adherence to treatment. Novel therapies targeting ineffective erythropoiesis and thus improving anemia and reducing the need for chronic blood transfusions seem promising. However, the complex nature of the disease itself requires personalized treatment plans for each patient. Collaborations and partnerships between thalassemia centers can also help share knowledge and resources, particularly in regions with higher prevalence and limited resources. This review will explore the different conventional treatment modalities available today for the management of ß-thalassemia, discuss the unmet needs and challenges associated with them in addition to exploring the role of some novel therapeutic agents in the field.


Subject(s)
Thalassemia , beta-Thalassemia , Humans , beta-Thalassemia/complications , Erythropoiesis/physiology , Thalassemia/therapy , Iron/therapeutic use , Hemoglobins
13.
Nutrients ; 15(24)2023 Dec 07.
Article in English | MEDLINE | ID: mdl-38140288

ABSTRACT

Dietary supplements are widely utilized by cancer patients as part of a complementary and integrative approach to their healthcare. However, a significant portion of patients refrain from discussing their supplement use with their physicians, often due to the perceived indifference or negativity of their healthcare providers. This communication gap exposes patients to unreliable information sources and potential risks associated with uninformed supplementation. As the healthcare landscape evolves, there is an increasing recognition of the pivotal role that physicians play in guiding patients' healthcare decisions. A patient-centered perspective prioritizes the provision of evidence-based information tailored to the individual's needs. It advocates for open discussions about potential risks and fosters shared decision making, respecting patient autonomy. Additionally, this approach involves offering alternative options, documenting patient preferences, and ensuring ongoing support while coordinating with the healthcare team. To address these evolving needs, healthcare providers must adopt a transformative perspective, becoming expert guides who engage with their patients as informed and empowered participants. This revised approach emphasizes an open dialogue that balances presenting facts and acknowledging uncertainties surrounding dietary supplement use. Our narrative review of the literature underscores the importance of a practical approach, centered on transparent discussions and respect for patient autonomy. By following this approach, healthcare providers can empower patients to navigate the complexities of dietary supplement use within the context of cancer care, thereby safeguarding patient safety and overall well-being. Notably, our proposed tool highlights the utilization of reliable sources, the risk stratification of supplements, specific recommendations, and subsequent monitoring, providing a structured framework for informed decision making.


Subject(s)
Dietary Supplements , Neoplasms , Humans , Dietary Supplements/adverse effects , Uncertainty , Neoplasms/therapy
14.
Disabil Rehabil ; : 1-9, 2023 Nov 06.
Article in English | MEDLINE | ID: mdl-37933167

ABSTRACT

PURPOSE: This scoping review was conducted to synthesize existing literature into a map of the common needs of families caring for patients with traumatic brain injury (TBI) at home. MATERIALS AND METHODS: A systematic search of studies published between January 2012 and December 2022 was conducted across databases. The selected studies reported the needs or unmet needs of patients with TBI and/or their family caregivers (FCs). RESULTS: A total of 12 publications were identified. The results suggest that the common needs of families caring for patients with TBI at home include: information about TBI as a disease; information about the continuum of TBI healthcare services; information about adaptive technologies; education and skilling of FCs; psychological support and counseling; physical and occupational therapy services; follow-up care and transitional care management; respite care; peer support; financial assistance, advocacy, and legal services; emotional support from the family and community; and assistance with physical patient care and instrumental activities of daily living. CONCLUSION: The mapped needs provide insight into supportive interventions required to enhance the health outcomes of patients with TBI and their families during and after rehabilitation. The needs also highlight directions for research and healthcare services for patients with TBI.


The families caring for patients with traumatic brain injury at home end up living in situations characterized by multiple unmet needs, and these can be a source of poor health outcomes for the family and patients with traumatic brain injury.The identified needs of families caring for patients with traumatic brain injury reveal gaps in the discharge planning and care coordination after acute and rehabilitation care.Addressing these needs requires a multidisciplinary approach and planning.Interventions using a holistic approach to address the identified needs may significantly improve the health outcomes of patients with traumatic brain injury and their families.

15.
Support Care Cancer ; 31(12): 642, 2023 Oct 18.
Article in English | MEDLINE | ID: mdl-37851274

ABSTRACT

PURPOSE: Effective cancer survivorship care is contingent on a comprehensive understanding and management of the dynamic needs of cancer survivors. The Sydney Cancer Survivorship Centre (SCSC) clinic established a holistic, multidisciplinary model of survivorship care. We aimed to explore survivors' experiences and perceptions of the clinic, and to identify their unmet needs. METHODS: Semi-structured focus groups (FGs) involving participants recruited from the SCSC clinic were conducted by an experienced facilitator and observer using a guide covering: survivor perceptions of first SCSC clinic visit, services accessed, ongoing unmet needs, and how needs changed over time. FGs were audio-recorded and transcribed. Interpretive description using a Framework approach was undertaken and participant characteristics summarised descriptively. RESULTS: Eight FGs were conducted involving a total of 26 participants (mean age: 60), most were female (n = 20), born in Australia (n = 14), and with breast cancer diagnoses (n = 16). Four overarching themes were identified: (i) perceptions of the SCSC clinic; (ii) patient-centred care; (iii) adjustment to illness; and (iv) external supports and resources. Participants valued the centralisation of multidisciplinary survivorship care at the SCSC clinic, which helped their recovery. Mitigating ongoing treatment sequelae, reassurance of good-health, normalisation of survivorship experiences, and handling caregiver stress represent some needs identified. CONCLUSIONS: The SCSC clinic offers holistic, specialised care and reassurance to cancer survivors. Adjustment to the survivorship journey, inter-survivor shared experiences, and management of physical treatment sequelae were perceived as important in their recovery. Managing survivor needs is integral to improving long-term survivorship care.


Subject(s)
Breast Neoplasms , Cancer Survivors , Humans , Female , Middle Aged , Male , Survivorship , Survivors , Focus Groups
16.
Patient Educ Couns ; 117: 107989, 2023 12.
Article in English | MEDLINE | ID: mdl-37812964

ABSTRACT

OBJECTIVES: Parents with cancer experience not only disease-related burden but also child- and family-related concerns. According to the German guidelines, all professionals working in oncology are responsible for addressing these burdens and needs and for involving the patient's relatives. This study aims to explore patients' perspectives on their experiences regarding family-centeredness in cancer care. METHODS: We conducted interviews with 18 cancer patients parenting at least one minor child (< 18). The interviews were audio-recorded, transcribed verbatim and analyzed using qualitative content analysis. RESULTS: Most parents reported that their healthcare professionals (HCPs) rarely or not routinely discussed family issues. There was a wide range of ways in which HCPs communicated about family issues. Parents often felt unsure about professionals' responsibilities and many of them expressed a desire for more proactive communication. CONCLUSIONS: The findings suggest that the majority of patients have unmet needs related to comprehensive care as parents. PRACTICE IMPLICATIONS: HCPs need to be sensitized to identify parents facing additional burdens and needs. It is essential that HCPs clarify parents' preferences regarding the extent of involvement of family issues in cancer care.


Subject(s)
Neoplasms , Parenting , Humans , Parents , Neoplasms/therapy , Health Personnel , Emotions , Qualitative Research
17.
Nurs Clin North Am ; 58(4): 581-593, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37833000

ABSTRACT

Unmet holistic needs of various cancer populations, with examples including prostate, bladder, gynecologic, kidney, penile, breast, and colorectal, along with holistic impacts of cancer on older adults, have been defined by a growing number of systematic reviews. Unfortunately, there continues to be a lack of clinical insight into the unique needs of younger men with testicular cancer. Survival rate based on low mortality rates and good prognosis if early detection and treatment implementation grows the number of men who need support as long-term survivors with an average life expectancy of approximately 30 to 50 years after treatment. Providers and clinicians need to approach testicular cancer survivors with the tools and strategies that meet these unmet needs for navigation from diagnosis through survivorship. When strategies of specific resources and education are implemented based on the unique needs of these individuals, positive outcomes and increased health care-related quality of life will be prevalent.


Subject(s)
Cancer Survivors , Testicular Neoplasms , Male , Humans , Female , Aged , Testicular Neoplasms/therapy , Quality of Life , Systematic Reviews as Topic , Health Services Needs and Demand , Surveys and Questionnaires
18.
J Womens Health (Larchmt) ; 32(11): 1241-1248, 2023 Nov.
Article in English | MEDLINE | ID: mdl-37669004

ABSTRACT

Background: Polycystic ovary syndrome (PCOS) management has hardly been standardized until recent years. There is an accurate, evidence-based guideline published by the European Society of Human Reproduction and Embryology (ESHRE). However, it remains unclear to which extent, if at all, the guideline is followed by health care providers. The aim was to explore the subjectively perceived quality of gynecological medical care in women with PCOS suffering from aesthetic complaints. Materials and Methods: A nonvalidated questionnaire was constructed in a standardized manner covering the domains: aesthetic aspects, metabolism, menstrual cycle, reproduction, mental health, and prevention of chronic noncommunicable diseases. Results: A total of 1960 participants with aesthetic complaints, such as acne (66.2%), alopecia (43.9%), hirsutism (77.9%), or overweight/obesity (72.3%) were included. The percentage of women being counseled was low (acne 20.3%, alopecia 12.9%, hirsutism 17.5%, overweight/obesity 36.2%). Satisfaction with counseling was moderate (40.4-44.1 points). Many women tried at least one therapeutic method (75.9%), whereas only a few were counseled for therapy (acne 27.0%, alopecia 24.6%, hirsutism 24.0%, overweight/obesity 18.8%) with moderate satisfaction for hyperandrogenism (mean 55.1-59.5 points) and good satisfaction for overweight/obesity (mean 60.8 points). Overall satisfaction was rated with a mean of 30.5 points (standard deviation 27.1) on a scale from 0 to 100 and thus considered "not satisfied." Fewer complaints were significantly correlated with higher satisfaction. Most women wished for more counseling (80.8%), as well as more diagnostic (63.2%) and therapeutic options (70.2%). Conclusions: Women affected by PCOS are not properly managed according to the ESHRE guideline. Indeed, this guideline recommends comprehensive history and physical examination for clinical hyperandrogenism as well as holistic approaches in therapy, including education and counseling of patients. Still, overall consultation rates and satisfaction were poor.


Subject(s)
Acne Vulgaris , Hyperandrogenism , Polycystic Ovary Syndrome , Female , Humans , Polycystic Ovary Syndrome/complications , Polycystic Ovary Syndrome/diagnosis , Hirsutism/therapy , Cross-Sectional Studies , Overweight , Alopecia/diagnosis , Obesity
19.
Medicina (Kaunas) ; 59(9)2023 Sep 13.
Article in English | MEDLINE | ID: mdl-37763774

ABSTRACT

Background and Objectives: Endometriosis causes significant personal and societal burden. Despite this, research funding lags behind other chronic conditions. Determining where to prioritise these limited funds is therefore vital. Research priorities may also differ between individuals with endometriosis and clinicians/researchers. The aim of this research project is to explore research priorities and factors shaping participation in endometriosis research from the perspective of people with endometriosis in Australia. Materials and Methods: Four focus groups involving 30 people with endometriosis were conducted and analysed using qualitative inductive content analysis. Results: Two categories were developed from the data: unmet research needs and motivators and barriers to participation in endometriosis research. Participants expressed interest in developing non-invasive diagnostic tools and a more multidisciplinary or holistic approach to treatment. Participants urgently desired research on treatment options for symptom management, with many prioritising non-hormonal treatments, including medicinal cannabis and complementary medicine. Others prioritised research on the causes of endometriosis over research on treatments to assist with prevention and eventual cure of the disease. The main drivers for participating in endometriosis research were hope for symptom improvement and a reduction in time to diagnosis. Research design features that were important in supporting participation included ease of access to testing centres (e.g., for blood tests) and sharing test results and automated data collection reminders, with simple stra-tegies to record data measurements. Research incentives for younger people with endometriosis and a broad dissemination of information about research projects was considered likely to increase participant numbers. Barriers included time commitments, a lack of flexibility around research appointments for data collection, travel or work commitments, concerns about the safety of some products, and trying to conceive a child. Conclusions: People with endometriosis were open to participating in research they felt aligned with their needs, with a significant focus on diagnostic tools and symptom relief. However, researchers must co-design approaches to ensure convenience and flexibility for research participation.


Subject(s)
Endometriosis , Child , Female , Humans , Australia , Qualitative Research
20.
J Cancer Surviv ; 2023 Aug 02.
Article in English | MEDLINE | ID: mdl-37531042

ABSTRACT

PURPOSE: To synthesize published studies regarding Japanese cancer survivors' needs/unmet needs of care/support, change of unmet needs over time, and preferred care/support providers. METHODS: A mixed-method systematic review was conducted. MEDLINE, PsycINFO, CINAHL, and Ichu-shi were searched from inception to May 2022. Quantitative and qualitative studies were separately analyzed using narrative synthesis and meta-ethnography. Each finding was synthesized using a line of argument. RESULTS: Twenty-four studies (13 quantitative and 11 qualitative studies) were included. Six quantitative studies reported unmet needs in survivors of adolescent and young adult (n=1) and adulthood (n=5) cancer. No longitudinal studies regarding changes in unmet needs were identified. One study reported that adults preferred care/support providers. The quantitative studies identified more help in physical (48.2-51.0%, n=2) and psychological issues (17.4-78.8%, n=5), information (27.9-58.0%, n=3), and healthcare services (25.3-67.1%, n=2) among adults. The qualitative studies emphasized more tailor-made information about life events for young cancer survivors. More empathic and trustworthy interactions with surrounding people, including healthcare professionals, were demanded, regardless of age. A line of argument illustrated that cancer survivors had insufficient resources for activities and empowerment to face life with cancer at all phases. CONCLUSIONS: Japanese cancer survivors' unmet needs are diverse. More information and resources for psychological care/support and local healthcare services post-treatment are needed, which may hinder the optimal transition to survivorship. IMPLICATIONS FOR CANCER SURVIVORS: The synthesized evidence should be utilized to implement a comprehensive care/support system in practice and educate people surrounding cancer survivors, regardless of age.

SELECTION OF CITATIONS
SEARCH DETAIL