Self-Reliance, Social Norms, and Self-Stigma as Barriers to Psychosocial Help Seeking Among Rural Cancer Survivors with Cancer-Related Distress: A Qualitative Interview Study (Preprint)

2021 ◽  
Author(s):  
Pamela Baker DeGuzman ◽  
David L Vogel ◽  
Veronica Bernacchi ◽  
Margaret A. Scudder ◽  
Mark J Jameson
Keyword(s):  
Cancer Survivors ◽  
Help Seeking ◽  
Psychosocial Care ◽  
Care Providers ◽  
Self Reliance ◽  
Qualitative Interview Study ◽  
Strength Based ◽  
Qualitative Descriptive ◽  
High Distress ◽  
Individual Self

BACKGROUND Even when technology allows rural cancer survivors to connect with supportive care providers from a distance, uptake of psychosocial referrals is low. During our telemedicine-delivered intervention aimed at identifying rural survivors with high distress and connecting them with psychosocial care, fewer than 1/3 of those with high distress accepted a referral. OBJECTIVE The purpose of this research was to examine the reasons rural cancer survivors did not accept a psychosocial referral. METHODS We utilized a qualitative descriptive design to analyze data from interviews conducted with participants who had been offered a psychosocial referral during the intervention. Interviews were conducted 6 weeks following the intervention (n=14) and 9 months after the completion of the intervention (n=6). RESULTS Ultimately, none of the rural cancer survivors in our study engaged with a psychosocial care provider, including those who had originally accepted a referral for further psychosocial care. When explaining their decisions, survivors minimized their distress, emphasizing their self-reliance and the need to handle distress on their own. They expressed a preference for dealing with distress via informal support networks, which was often limited to close family members. No survivors endorsed public stigma as a barrier to accepting psychosocial help, but several suggested that self-stigma associated with not being able to handle their own distress was a reason for not seeking care. CONCLUSIONS Rural cancer survivors’ willingness to accept a psychosocial referral may be mediated by the rural cultural norm of self-reliance, and by self-stigma. Interventions to address referral uptake may benefit from further illumination of these relationships as well as a strength-based approach that emphasizes positive aspects of the rural community and individual self-affirmation. CLINICALTRIAL not applicable

scholarly journals Self-Reliance, Social Norms, and Self-Stigma as Barriers to Psychosocial Help Seeking Among Rural Cancer Survivors with Cancer-Related Distress

2021 ◽  
Author(s):  
Pamela B. DeGuzman ◽  
David L. Vogel ◽  
Veronica Bernacchi ◽  
Margaret A. Scudder ◽  
Mark J. Jameson
Keyword(s):  
Cancer Survivors ◽  
Help Seeking ◽  
Psychosocial Care ◽  
Care Providers ◽  
Self Reliance ◽  
Strength Based ◽  
Qualitative Descriptive ◽  
High Distress ◽  
Individual Self ◽  
Close Family

Objectives: Even when technology allows rural cancer survivors to connect with supportive care providers from a distance, uptake of psychosocial referrals is low. During our telemedicine-delivered intervention aimed at identifying rural survivors with high distress and connecting them with psychosocial care, fewer than 1/3 of those with high distress accepted a referral. The purpose of this research was to examine the reasons rural cancer survivors did not accept a psychosocial referral. Methods: We utilized a qualitative descriptive design to analyze data from interviews conducted with participants who had been offered a psychosocial referral during the intervention. Interviews were conducted 6 weeks following the intervention (n=14) and 9 months after the completion of the intervention (n=6). Results: Ultimately, none of the rural cancer survivors in our study engaged with a psychosocial care provider, including those who had originally accepted a referral for further psychosocial care. When explaining their decisions, survivors minimized their distress, emphasizing their self-reliance and the need to handle distress on their own. They expressed a preference for dealing with distress via informal support networks, which was often limited to close family members. No survivors endorsed public stigma as a barrier to accepting psychosocial help, but several suggested that self-stigma associated with not being able to handle their own distress was a reason for not seeking care. Significance of Results: Rural cancer survivors' willingness to accept a psychosocial referral may be mediated by the rural cultural norm of self-reliance, and by self-stigma. Interventions to address referral uptake may benefit from further illumination of these relationships as well as a strength-based approach that emphasizes positive aspects of the rural community and individual self-affirmation.

scholarly journals Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Stefanie Witt ◽  
Kaja Kristensen ◽  
Silke Wiegand-Grefe ◽  
Johannes Boettcher ◽  
Janika Bloemeke ◽  
...  
Keyword(s):  
Rare Diseases ◽  
Psychosocial Support ◽  
Psychosocial Care ◽  
Routine Care ◽  
System Level ◽  
Organizational Level ◽  
Care Providers ◽  
Patient Organizations ◽  
Qualitative Interview Study ◽  
The Family

Abstract Background Rare diseases occur in early childhood and have a major impact on the quality of life of the affected children and their families. Their need for psychosocial support is considerable, but psychosocial care in Germany is still far from being part of routine care. We interviewed experts to explore how they describe the current pathways to psychosocial care, potential barriers and problems, and possibilities for improvements. Results We conducted telephone interviews with 49 experts working in somatic medicine, psychosocial medicine, patient organizations, child and youth welfare, and the educational sector. Interviews were transcribed and analyzed using focused interview analysis. Results document ways of access and facilities used by families to receive psychosocial care. The barriers described by the experts can be summarized on three levels: the family-organizational level, the family-psycho-emotional level, and finally, the structural system level. Accordingly, suggestions for improvement were directed at these levels. Conclusion Based on the experts' perspectives, there is ample room for improvement to facilitate the pathways to psychosocial care for children with rare diseases and their families. Unfortunately, there seems to be a long way to go before psychosocial care will be routinely provided. However, awareness of the issue among different professional groups is high, and numerous suggestions for improvement were made, including continuous expansion of services to all family members, strengthening of low-threshold services, simplifying application procedures, and more cooperation between different funding agencies as well as between different care providers.

Strategi Pengembangan Instalasi Farmasi Rsud Sosodoro Djatikoesoemo Bojonegoro dengan Metode SWOT

2015 ◽  
Vol 1 (1) ◽  
Author(s):  
Youstiana Dwi Rosita
Keyword(s):  
Development Strategy ◽  
Health Care Providers ◽  
Clinical Pharmacy ◽  
Swot Analysis ◽  
Care Providers ◽  
Qualitative Descriptive ◽  
Study Population ◽  
Strategy Planning ◽  
The Government

ABSTRAK Rumah sakit adalah institusi penyedia jasa layanan kesehatan, Rumah Sakit Umum Daerah Dr. R. Sosodoro Djatikoesoemo Bojonegoro sebagai salah satu Rumah Sakit milik pemerintah kabupaten Bojonegoro. Sebagai pusat rujukandari beberapa rumah sakit di daerah Bojonegoro dan sekitarnya. Dalam penelitian ini menggunkan suatu pen dekatan dengan analisis SWOT yang merupakan langkah awal dari suatu perencanaan strategi pengembangan yang dimulai dengan identifikasi masalah, tujuan organisasi sampai pada menimbang kekuatan dan kelemahan sendiri serta peluang dan ancaman dari luar dan juga melakukan beberapa langkah penting yang menunjang pemasaran atau pengembangan. Jenis penelitian ini adalah penelitian studi kasus dengan menggunakan rancangan penelitian deskriptif kualitatif dan Populasi dalam penelitian ini populasinya adalah pasien rawatinap dan pasien rawat jalan sebanyak 200 orang responden Sampel merupakan sebagian atau wakil populasi yang diteliti. Dalam penelitian ini mengunakan sampling pertimbangan (Judgement Sampling) Dari hasil pendekatan dengan analisis SWOT perlunya pelaksanaan atau realisasi dari struktur organisasi yang menempatkan farmasis dalam farmasi klinik, peningkatan kualitas dan kuantitas sumber daya manusia, serta perlunya penambahan fasilitas berhubungan dengan IPTEK untuk kegiatan pelayanan farmasi baik secara manajerial maupun ke arah farmasi klinik. Kata Kunci : Farmasi, Analisis SWOT ABSTRACT The hospital is an institution health care providers, Regional General Hospital Dr. R. Sosodoro Djatikoesoemo Bojonegoro as one of the government-owned hospital Bojonegoro. As the center rujukandari several hospitals in Bojonegoro and the surrounding area. In this study using the approach with a pen SWOT analysis is the first step of a development strategy planning which starts with the identification of the problem, the purpose of the organization came to weigh their own strengths and weaknesses, opportunities and threats from the outside and also did some important steps to support the marketing or development. This research is a case study using qualitative descriptive study design and population in this study population was rawatinap patients and outpatients as many as 200 people respondent sample is partially or representative of the population studied. In this study, using sampling considerations (Judgement Sampling) From the SWOT analysis approach with the need for the implementation or realization of the organizational structure that puts pharmacists in clinical pharmacy, improving the quality and quantity of human resources, as well as the need for additional facilities related to science and technology for good pharmaceutical service activities managerially and in the direction of clinical pharmacy. Key Words : Pharmacy, SWOT Analysis

scholarly journals Perspectives of Survivorship Care Plans Among Older Breast Cancer Survivors: A Pilot Study

2020 ◽  
Vol 27 (1) ◽  
pp. 107327482091720
Author(s):  
Jessica L. Krok-Schoen ◽  
Michelle J. Naughton ◽  
Anne M. Noonan ◽  
Janell Pisegna ◽  
Jennifer DeSalvo ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Health Care ◽  
Pilot Study ◽  
Focus Groups ◽  
Cancer Survivors ◽  
Breast Cancer Survivors ◽  
Survivorship Care Plan ◽  
Survivorship Care ◽  
Care Providers ◽  
Term Care

The Commission on Cancer’s standard 3.3 represents a paradigm shift in the care of cancer survivors, recommending that survivors receive a treatment summary and survivorship care plan (SCPs). A focus on older breast cancer survivors is needed, as they are the majority of the breast cancer population and their experiences and perspectives of SCPs is limited in the literature. This pilot study utilized a mixed methods approach (focus groups and self-report questionnaire data) to gather information on older (≥65 years) breast cancer survivors’ perspectives of their SCPs, cancer survivorship, and communication with their health-care providers. The questionnaire was completed individually by the participants prior to the focus group and contained items on basic demographics and their health status following cancer treatment. The focus groups indicated that only a minority of women actually developed a SCP. Those who developed a SCP in collaboration with their providers valued the personal care and attention received. However, some participants reported poor communication with their providers and within their health-care team, resulting in frustration and confusion. Participants’ suggestions for ideal SCPs included better education and personalization, particularly in appropriate nutrition and exercise, and managing side effects and comorbidities. Lastly, the women believed that additional long-term care resources, such as health coaches, were important in improving their survivorship. These findings provide insight into enhancing the content, communication, and application of SCPs to improve the survivorship experience of older breast cancer survivors.

scholarly journals What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents

2021 ◽  
pp. 026921632110233
Author(s):  
Cari Malcolm ◽  
Katherine Knighting
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Care Service ◽  
Life Care ◽  
Care Providers ◽  
Specialist Care ◽  
Bereaved Parents ◽  
Home Based ◽  
Qualitative Interview Study ◽  
At Home

Background: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely reported, particularly from the perspective of parents who experienced the death of a child at home. Aim: To explore the value and assess the effectiveness of an innovative model of care providing home-based, end-of-life care as perceived by families who accessed the service. Design: A qualitative descriptive study design was employed with in-depth semi-structured interviews conducted with bereaved parents. Setting/participants: Thirteen bereaved parents of 10 children supported by the home-based end-of-life care service. Results: Parents reported effective aspects of end-of-life care provided at home to include: (1) ability to facilitate changes in preferred place of death; (2) trusted relationships with care providers who really know the child and family; (3) provision of child and family-centred care; (4) specialist care and support provided by the service as and when needed; and (5) quality and compassionate death and bereavement care. Parents proposed recommendations for future home-based end-of-life care including shared learning, improving access to home-based care for other families and dispelling hospice myths. Conclusion: Parents with experience of caring for a dying child at home offer valuable input to future the policy and practice surrounding effective home-based, end-of-life care for children. New models of care or service developments should consider the key components and attributes for effective home-based end-of-life identified by bereaved parents in this study.

scholarly journals Factors Associated with Meeting the Psychosocial Needs of Cancer Survivors in Nova Scotia, Canada

2020 ◽  
Vol 28 (1) ◽  
pp. 13-25
Author(s):  
Soleil Chahine ◽  
Gordon Walsh ◽  
Robin Urquhart
Keyword(s):  
Primary Care ◽  
Nova Scotia ◽  
Cancer Survivors ◽  
Sociodemographic Factors ◽  
Patient Navigator ◽  
Care Providers ◽  
Psychosocial Needs ◽  
Factors Associated ◽  
Follow Up Care

Purpose: The purpose of this study is to describe the psychosocial needs of cancer survivors and examine whether sociodemographic factors and health care providers accessed are associated with needs being met. Methods: All Nova Scotia survivors meeting specific inclusion and exclusion criteria are identified from the Nova Scotia Cancer Registry and sent an 83-item survey to assess psychosocial concerns and whether and how their needs were met. Descriptive statistics (frequencies, percentages) and Chi-square analyses are used to examine associations between sociodemographic and provider factors and outcomes. Results: Anxiety and fear of recurrence, depression, and changes in sexual intimacy are major areas of concern for survivors. Various sociodemographic factors, such as immigration status, education, employment, and internet use, are associated with reported psychosocial health and having one’s needs met. Having both a specialist and primary care provider in charge of follow-up care is associated with a significantly (p < 0.05) higher degree of psychosocial and informational needs met compared to only one physician or no follow-up physician in charge. Accessing a patient navigator also is significantly associated with a higher degree of needs met. Conclusions: Our study identifies the most prevalent psychosocial needs of cancer survivors and the factors associated with having a higher degree of needs met, including certain sociodemographic factors, follow-up care by both a primary care practitioner and specialist, and accessing a patient navigator.

scholarly journals Depression and Suicidality in Gay Men: Implications for Health Care Providers

2017 ◽  
Vol 11 (4) ◽  
pp. 910-919 ◽  
Author(s):  
Carrie Lee ◽  
John L. Oliffe ◽  
Mary T. Kelly ◽  
Olivier Ferlatte
Keyword(s):  
Health Care ◽  
Gay Men ◽  
Health Care Providers ◽  
Help Seeking ◽  
Adult Population ◽  
Well Being ◽  
Sexual Practices ◽  
Care Providers ◽  
Physical And Mental Health ◽  
Prevalence Of Depression

Gay men are a subgroup vulnerable to depression and suicidality. The prevalence of depression among gay men is three times higher than the general adult population. Because depression is a known risk factor for suicide, gay men are also at high risk for suicidality. Despite the high prevalence of depression and suicidality, health researchers and health care providers have tended to focus on sexual health issues, most often human immunodeficiency virus in gay men. Related to this, gay men’s health has often been defined by sexual practices, and poorly understood are the intersections of gay men’s physical and mental health with social determinants of health including ethnicity, locale, education level, and socioeconomic status. In the current article summated is literature addressing risk factors for depression and suicidality among gay men including family acceptance of their sexual identities, social cohesion and belonging, internalized stigma, and victimization. Barriers to gay men’s help seeking are also discussed in detailing how health care providers might advance the well-being of this underserved subgroup by effectively addressing depression and suicidality.

Climbing Back Up the Mountain

2016 ◽  
Vol 33 (10) ◽  
pp. 972-976 ◽  
Author(s):  
Sadie P. Hutson
Keyword(s):  
Health Care Providers ◽  
Care Providers ◽  
Care Needs ◽  
Subjective Data ◽  
South Central ◽  
Persons Living With Hiv ◽  
Advanced Planning ◽  
Qualitative Descriptive ◽  
Eol Care ◽  
Hiv Aids

Little is known about the health access and end-of-life (EOL) concerns of persons living with HIV/AIDS (PLWHA) in Appalachia, where religious and cultural values are largely traditional. A qualitative, descriptive study with 9 participants was undertaken to assess EOL care needs among those from South Central Appalachian PLWHA. The focus of the study was to examine subjective data regarding EOL needs assessment related to advanced care planning. Five men and 4 women self-acknowledged a diagnosis of HIV/AIDS and completed a 2-hour face-to-face interview with the nurse researcher. Data were analyzed using qualitative descriptive content analysis methods, including data coding for emergent themes and metaphors. A common metaphor tied content to both struggle and triumph as well as the beauty and ruggedness of the Appalachian region: “Climbing Back up the Mountain.” Rich descriptions of the significance of the metaphor match with stigma as the greatest hurdle to overcome in planning and interacting with others, including health care providers and significant others, about EOL care needs and advanced planning preferences. Further, the metaphor was derived directly from quotes offered by participants. Sources of stigma were often intersecting: the disease itself, associations with “promiscuity,” sexual minority status, illicit drug use, and so on. Strong spiritual images were contrasted with a common avoidance and disdain of organized religion. Findings were used in refining plans for a larger study of EOL care needs and concerns on the population of PLWHA in 2 Southern Appalachian states. Comparison with other research and insights for providers is included.

Development of an evidence-informed recommendation guide to facilitate physical activity counseling between oncology care providers and patients in Canada

2021 ◽  
Author(s):  
Angela J Fong ◽  
Catherine M Sabiston ◽  
Michelle B Nadler ◽  
Jonathan Sussman ◽  
Hugh Langley ◽  
...  
Keyword(s):  
Physical Activity ◽  
Cancer Survivors ◽  
Physical Function ◽  
Sports Medicine ◽  
Development Process ◽  
Assessment Criteria ◽  
Care Providers ◽  
Agree Ii ◽  
Physical Activity Counseling ◽  
Oncology Care

Abstract Decision support aids help reduce decision conflict and are reported as acceptable by patients. Currently, an aid from the American College of Sports Medicine exists to help oncology care providers advise, assess, and refer patients to physical activity (PA). However, some limitations include the lack of specific resources and programs for referral, detailed PA, and physical function assessments and not being designed following an international gold standard (Appraisal of Guidelines for Research and Evaluation [AGREE] II). This study aimed to develop a recommendation guide to facilitate PA counseling by assessing the risk for PA-related adverse events and offering a referral to an appropriate recommendation. Recommendation guide development followed AGREE II, and an AGREE methodologist was consulted. Specifically, a stakeholder group of oncology care providers and cancer survivors were engaged to develop the assessment criteria for comorbidities, PA levels, and physical function. Assessment criteria were developed from published PA interventions, consultations with content experts, and targeted web-based searches for cancer-specific PA programs. Feedback on the recommendation guide was solicited from stakeholders and external reviewers with relevant knowledge and clinical experience. Independent AGREE methodologists appraised the development process. The recommendation guide is a five-page document, including a preamble, assessment criteria for absolute contraindications to PA, comorbidities, and PA/functional capacity with a list of appropriate resources. Independent AGREE methodologists rated the development process as strong and recommended the guide for use. The recommendation guide has the potential to facilitate PA counseling between oncology care providers and cancer survivors, thus, potentially impacting PA behavior.

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