Primary Support Persons Research Articles

Exploring adults as support persons for improved pre-exposure prophylaxis for HIV use among select adolescents and young adults in the Deep South.

PurposePre-exposure prophylaxis for HIV (PrEP) is an effective yet underutilized biomedical tool for adolescents and young adults’ (AYA) HIV prevention due to barriers such as PrEP adherence. We assessed HIV prevention knowledge, attitudes and beliefs from adults who self-identified as a primary support person to an AYA.MethodsWe surveyed AYA primary support persons at an academic hospital. Univariate and multivariate regression analyses were completed to identify factors associated with the belief AYAs engaging in HIV-associated behaviors should use PrEP and willingness to support AYAs on PrEP.Results200 primary support persons completed the survey. Participants were predominately female (77%) and black (56%). Nearly all primary support persons believed AYAs engaging in HIV-associated behaviors should take PrEP (94%) and 98% would support an AYA taking PrEP via transportation to appointments, assistance with refilling prescriptions, medication reminders, or encouragement.ConclusionsPrimary support persons are willing to support AYAs using PrEP.

"There Is No Before Cancer… There Is Only Cancer." Perceived Late Effects of Pediatric Cancer on Survivors.

Although "late effects" connotes experiencing effects later in life, they can emerge immediately after active treatment. The effects that survivors experience have been reported but rarely from the point of view of the survivors regarding their life after treatment. To examine the perceived late effects of pediatric cancer on survivors and their self-identified primary support persons in order to understand the multifaceted nature of living after a pediatric cancer diagnosis. Using a pragmatic interpretive phenomenology approach, 10 survivors of pediatric cancer (aged 21-28 years) and 9 of their support persons (aged 23-73 years) participated, completing background questionnaires and semistructured, one-on-one interviews. Interview transcripts were analyzed thematically. Both survivors and support persons acknowledged that survivors experienced negative physical and cognitive health outcomes that require follow-up care. Survivors acknowledged that their cancer experience and residual effects have changed the trajectory of their lives. Research on young adult survivors of pediatric cancer and the residual/late effects and emotional outcomes they experience is warranted. Longitudinal research can aid in understanding how effects develop or worsen over time. The findings of this study support The Children's Oncology Group Long-term Follow-up Guidelines for practitioners. As the frontline caring for these individuals and families, nurses' involvement in transitional care out of treatment is necessary. Continued involvement and understanding of long-term pediatric cancer survivorship for nurses are also imperative for continuity for survivors and families.

The Use of Simulation to Improve Family Understanding and Support of Anesthesia Providers.

Introduction Burnout in medical providers is associated with work dissatisfaction, reduction in patient safety, and provider depression. Simulation is a tool effectively used for specific task training but has not been broadly used as a means to combat medical professional stress and enhance wellness. The authors created a medical simulation program targeted at those involved in the social support of medical providers. The hypothesis was that education of non-medical persons involved in social support would translate into an enhanced understanding of the demands among medical providers in anesthesiology. This understanding would thereby open communication pathways within the social support system and contribute to enhanced wellness among providers.MethodsTo assess effectiveness and benefits of the event, survey data were obtained from anesthesia providers and their adult support persons before and after the event. The anesthesia providers were queried on their perception regarding the benefit of the event for their support persons. Support persons were asked questions regarding their understanding of the role of an anesthesia provider.ResultsSixty-three family members and friends (adult=30, child=33) participated in a two-hour simulation event including activities for participants of all ages. Twenty-nine (96.7%) adult participants (age ≥ 14) completed the support person surveys before and/or after the event. The post-event survey results revealed participants’ satisfaction with the event (n=26, 100%). This simulation event also demonstrated an improved understanding of the demands among anesthesia providers by their support persons (seven items, P values range from less than .0001 to .0313). Most anesthesia providers who attended the event enjoyed it a significant amount (n=19, 82.6%). Most providers whose primary work-related support persons attended the event believed that it would be easier to communicate work-related issues (n=12, 85.7%).ConclusionWe outline "The Family Anesthesia Experience Day" as a wellness initiative for anesthesia providers. Our study demonstrated improved understanding of support persons’ knowledge about anesthesia providers’ work-related stress via an immersive two-hour simulation-based learning experience. The event was well-received and may be a useful approach to provide support persons with an opportunity to learn about and better support their beloved anesthesia provider.

Who is a survivor? Perceptions from individuals who experienced pediatric cancer and their primary support persons

The purpose of this research was to examine the lived experiences of individuals who had cancer as children, as well as lived experiences of their current primary support persons. Based on van Manen's "new" interpretive phenomenology, interviews were conducted with ten pediatric cancer survivors and nine of their support persons to gain a more holistic understanding of the pediatric cancer experiences of children and their families. Four themes emerged from the data; however, only the topic of the use of the term "survivor" and identification with the term will be discussed. All participants in the study described their personal definition of the term survivor and what it meant to be a survivor. Additionally, all individuals in the study discussed the concept of being a survivor and if they would consider themselves, or their loved ones, to be "survivors." The results of this study provide health care professionals, family members, and individuals fundraising or advocating for cancer causes with insights on how the term survivor may be interpreted. This study may provide insight to individuals who had cancer as children, in showing that their personal perspective shapes their identity; although "survivor" is common cancer vernacular, individuals can choose not to identify with their illness experiences.

'Shadowing' as a management strategy for chemotherapy outpatient primary support persons.

Despite growing numbers of patients with cancer receiving chemotherapy in outpatient settings and the corresponding increase in care demands on family and close friends, little is known about the experiences of those informal carers supporting people with cancer during their chemotherapy trajectories. Using an interpretivist theoretical framework, this study explored the experiences of primary support persons of chemotherapy outpatients through in-depth interviews with 17 participants nominated as their primary support persons by people receiving chemotherapy at a large tertiary hospital in Australia. The study demonstrates that primary support persons of chemotherapy outpatients face distinct challenges, being at the frontline of treatment and managing side effects with minimal support at home. This role involves sensitive provision of complex medical and social care in circumstances that profoundly challenge the everyday worlds of both patient and carer. From the moment of diagnosis, informal carers in this context face the 'double whammy' of needing to 'manage' the cancer diagnosis experience as well as the chemotherapy trajectory experience. This study points to the significant level of responsibility that primary support persons take on, and the extent to which patients and clinicians rely on their support and management skills. It also points, however, to the lack of recognition they receive for assuming this role, and their sense of frustration in the face of this invisibility. The conceptualisation of the informal carer role as a 'shadowing' role explicitly represents the protective, vigilant, but almost invisible, support role described by the participants in this study.

The integration of formal and informal care provision: An exploratory study of the experiences of primary support persons of chemotherapy outpatients

The International Journal of Integrated Care (IJIC) is an online, open-access, peer-reviewed scientific journal that publishes original articles in the field of integrated care on a continuous basis.IJIC has an Impact Factor of 2.913 (2021 JCR, received in June 2022)The IJIC 20th Anniversary Issue was published in 2021.

“As long as you need me I’m yours.” Caregiving for a pediatric cancer survivor

A pediatric cancer diagnosis is devastating – to children, as well as their families. Children experience a variety of negative effects, whether physical, cognitive, and/or emotional, and often face continued or newly developed effects l past remission termed late effects. However, it is imperative to note that support persons, or caregivers of survivors of pediatric cancer, are also affected by their caregiver roles as they help their survivors cope with their late effects. This study aimed to understand how caring for pediatric cancer survivors influences facets of caregivers lives. Nine primary support persons of pediatric cancer survivors (as chosen by the survivors they care for) participated in one-on-one, semi-structured interviews, in which they discussed their roles in caring for a pediatric cancer survivor, and how being a support person has affected their lives. A total of four themes emerged from the research, but for the purposes of this paper only the theme “As long as you need me I’m yours” will be discussed. From this theme, two subthemes emerged: (1) “Do their effects affect me?” and (2) “You realize what’s important and it sticks with you.” Support persons experienced negative emotional and cognitive effects, such as worrying or feelings of anxiety for their survivors, but also admitted to finding silver linings in their experiences. As well, caregivers expressed that they have developed stronger relationships with their survivors and family, in addition to developing newly optimistic outlooks on life. This work provides valuable information for policy makers and health care professionals to ensure that adequate supports and resources are available to caregivers for the multifaceted needs they may have in supporting pediatric cancer survivors.

The Effect of Cognitive Appraisal on Quality of Life of Providers of Home Care for Patients With Stroke.

Stroke is a major cause of long-term disability. Most stroke survivors return to their own home and need to be cared for by family members, most of whom are informal caregivers. The aim of this study was to identify whether cognitive appraisal influences health-related quality of life. A cross-sectional, descriptive, correlational design was used. Participants included 77 primary support persons, mean age = 59.47 years, who were younger than stroke survivors (mean age = 78.13 years). Data were collected between March-November 2012 and obtained through face-to-face interviews, using the Short-Form-36 Health Survey, Caregiver Burden Inventory, and five cognitive appraisal questions. In addition, the Barthel Index, Modified Rankin Scale, and Glasgow Coma Scale were used to assess patient disease severity. Hierarchical multiple regression analysis was used to identify predictors of health-related quality of life. The results indicated that 61% of participants rated their health as poor or fair. Patient severity, gender of primary support person, age, employment, burden, and cognitive appraisal impact accounted for 45.8% of the variance in primary support persons' physical component summary of health-related quality of life, with age, burden, and appraisal impact being the strongest of six predictors. In addition, burden and appraisal impact were the strongest of six predictors, explaining 18.1% of the variance in primary support persons' mental component summary of health-related quality of life. The results of the current study further highlight the importance of cognitive appraisal on the stroke survivor's primary support person's health-related quality of life.

Liver transplantation in older adults.

Liver transplantation is the only definitive treatment therapy for end-stage liver disease. In the United States, approximately 15% of annual liver transplant recipients are 65 or older. The most common postoperative complications are infection, acute graft rejection, and acute renal failure. To prevent complications, recipients are treated with immunosuppressive medications and anti-infective agents. The long-term complications of liver transplantation are a consequence of long-term use of immunosuppressive medications and recurrence of the original disease in the liver. Nurses play a critical role in supporting and educating recipients and their primary support persons about post-transplant follow-up care, including laboratory test schedules, medication management, and infection prevention. Strict compliance with follow-up care provides the greatest possibility of avoiding complications or organ rejection.

Families United/Familias Unidas

The purpose of this study is to describe the development and implementation of a new diabetes prevention intervention that combines the benefits of family support with the group office model. Intensive lifestyle modification can effectively delay the onset of type 2 diabetes, yet health providers are challenged in translating these results to their patients. The group outpatient visit model can provide a means to address prevention issues in a financially sustainable manner. Materials from the Diabetes Prevention Program and a previously developed group office visit program were combined to create the Families United/Familias Unidas curriculum. The session content utilized a multiculturally tailored approach designed to help participants decrease portion size, decrease carbohydrate intake, increase physical activity, and increase resiliency. Adults aged 18 to 70 were recruited who had any diabetes risk factors but did not have diabetes. Eligible participants enlisted a support person, aged 14 to 70, to join them in the 6-month group office visit intervention. Twenty-nine pairs (n = 58) of primary participants plus support persons were recruited. Participants' average age was 45; 74% were female; 56.9% identified themselves as white and 37.9% as Hispanic/Latino. Over one-third had 4 or more diabetes risk factors. Twelve family group office visits were delivered over 6 months. The attendance rate for those who attended at least one session was 72%. Group office visits can provide a new sustainable model for diabetes prevention and are a natural fit for primary care physicians in collaboration with other health care professionals, such as dieticians or diabetes educators.

Parents’ Perspectives on Braille Literacy: Results from the ABC Braille Study

Introduction Parents who were the primary caretakers of children in the Alphabetic and Contracted Braille Study (ABC Braille Study) revealed their perspectives about braille literacy. Methods A 30-item questionnaire was constructed by the ABC Braille research team, and researchers conducted telephone interviews with 31 parents who were the primary caregivers of children in the ABC Braille Study. The questions investigated how often the parents read to their children, whether print or braille books were available at home, what their primary goals were for their children, and whether they knew braille. The data were analyzed using descriptive statistics. Demographic information was also gathered and analyzed. Last, the parents were separated into two groups on the basis of the students’ achievement, and data on the parents of the high-achieving students were compared with data on the parents of the low-achieving students. Results The data from the interviews showed that the participants often read to their children and provided them with some braille books. The primary goals of the parents were that their children learn to read and write braille, and the parents indicated that braille would be the primary medium throughout their children's lives. Although many parents knew at least the braille alphabet (20 of the 31 participants), only 3 of the 31 indicated that they know contracted braille. The findings revealed a slight relationship between the parents’ level of education and the children's reading performance. Discussion The participants placed a high value on supporting literacy at home by reading to their children, learning some braille, and providing their children with books. However, the availability of braille books at home was limited in comparison to the availability of print books, and the participants’ knowledge of contracted braille was limited. Implications for Practitioners The involvement of parents is critical to promoting positive literacy experiences at home. Teachers of students with visual impairments are regarded as the primary support persons who provide resources for parents of children who are learning braille, including resources for learning braille and braille materials for use at home.

A Dyadic Affair

Couples facing lung cancer may be at an increased risk of relationship distress in relation to unresolved blame and anger. Using a comparative design, we conducted preliminary analyses of illness attributions as reported by 100 patients and their primary support persons. Patients and support persons responded to a series of 5-point Likert-type questions to capture locus of causality and controllability as well as attribution-related cognitions and emotions. Most patients and support persons had a smoking history. Both patients and support persons ascribed the locus of causality and controllability for lung cancer as the patient. Between-group analyses revealed that patients and support persons ascribed more negative attributions toward oneself and more positive attributions toward their partner. However, within-group analysis revealed that support persons tended to ascribe more responsibility, fault, and blame toward the patient. We speculated that patients may be responding to negative signals received from their support persons that perpetuated their self-blame. The care of patients, particularly those who used tobacco, might be approached from a "shared line of attack," wherein both patients and support persons are encouraged to examine and understand their attributions to "soften" the blame and anger toward oneself or their partner.

Leben mit einer chronischen Bauchwunde – Die Erfahrung Betroffener und ihre Erwartungen an die betreuenden Fachpersonen

Chronic abdominal wounds lead to prolonged hospital stays. However, no data exist that describe the experience of persons living with a chronic abdominal wound. The aim of this qualitative study was to explore the experience of persons living with chronic abdominal wounds and elicit their expectations in health professionals. Narrative interviews were conducted with five women and four men. Using content analysis techniques, five categories with one to four subcategories emerged from the data. "Returning to everyday life without a wound" represents the main goal of the participants and is driven by their hope to achieve this outcome. "Everyday life with the wound" illustrates the reality of participants' lives, which is affected by suffering. "The patients' work" demonstrates the component that patients contribute to managing their wound. "The work of primary support persons" shows the importance of the work of people close to the patient. "The work of professionals" includes the expectations that patients have in their caregivers. Teamwork between professionals, patients and primary support persons seems to be an essential condition for the successful healing of an abdominal wound.

Primary Support Persons for Individuals who are Visually Impaired: Who they are and the Support they Provide

As proportion of older adults in U.S. population grows, prevalence of visual related to cataracts, glaucoma, macular degeneration, and diabetic retinopathy will increase as well. According to Friedman, Congdon, Kempen, and Tielsch (2002), the number of Americans with age-related eye disease and vision that results is expected to double within next three decades. Individuals who are visually impaired require various degrees of support and assistance in their daily activities. This assistance is frequently provided by a support person, who may be a family member or friend who assists with all day-to-day activities. Despite research on experiences of primary support persons for individuals with other types of chronic conditions, such as dementia, stroke, and cancer, there has been little research on individuals who provide primary support to persons who are visually impaired. It is not clear whether these care givers feel a sense of strain or feel burdened by their role. As Chia et al. (2004, p. 73) noted, the burden [of caring for persons with] visual will increase as [the] prevalence [of visual impairment] increases ... due to aging population. The study reported here sought to provide some preliminary data on experiences of primary support persons of individuals who are visually impaired. BACKGROUND AND SIGNIFICANCE Research related to experience of visual has focused mainly on perspectives of individuals who are visually impaired. McIlvane and Reinhardt (2001) found that high-quality support from family members and friends was associated with lower levels of depressive symptoms among 241 elderly patients of a vision rehabilitation services agency. In addition, it was quality of social relationships, not quantity of social network members, that was most important for functioning and well-being of these older adults. Adaptation to visual was better in older adults who reported receiving high-quality support. However, McIlvane and Reinhardt did not measure type or amount of support activities that these elder adults received. Without this information to describe context and extent of needed support, it is difficult to generalize findings to other populations and situations. Bernbaum, Albert, Duckro, and Merkel (1993) found that diabetes-related visual was a major stressor in marital relationships. They noted that regardless of length of pre-existing relationship, greatest risk to marriage occurs soon after visual impairment (p. 676). In their sample, of couples who were in a committed relationship at time of onset of one partner's visual impairment, 50% were later separated; mean amount of time from onset of visual to separation was 1.6 years. Although both health and vision professionals must address this potential stress to help families cope with visual impairment, research has provided insufficient data and recommendations for such interventions. The research questions for this study were as follows: (1) What are demographic and social characteristics of primary support persons of individuals who are visually impaired? (2) What support activities are provided by primary support persons, and how much time per week is spent doing these activities? and (3) How do these primary support persons score on Caregiver Reaction Assessment (CRA), an instrument that was designed to measure caregivers' burden or strain? (Given et al., 1992). METHOD Sample A purposive, consecutive sample of 28 adults who reported being primary support persons for individuals who were visually impaired was recruited for study through a low vision services clinic. The visually impaired individuals had other chronic health problems; however, their primary support persons were recruited if visual was reported to be most disabling or burdensome condition requiring support. …

A Qualitative Needs Assessment of Persons Who Have Experienced Traumatic Brain Injury and Their Primary Family Caregivers

To determine the expressed needs of persons with traumatic brain injury (TBI) and their primary family caregivers. Semistructured interviews with content-analytic techniques to identify respondents' needs. Eighty persons with TBI, with an average time since their most severe TBI of 5.8 years, and 85 primary support persons. Respondents described their needs via phases that paralleled transitions in settings, treatments, and responsibilities (ie, acute care, in-patient rehabilitation, return home, and living in the community). Prominent themes during in-patient phases included provider quality, emotional support, and understanding the injuries. Prominent themes during the latter 2 phases included guidance, life planning, community integration, and behavioral and emotional issues. Participants reported insufficient education and preparation for the future. Current methods of identifying needs may not be based on these populations' perceptions, and often miss the natural divisions of needs that occur over the course of treatment and rehabilitation. To meet their needs, services must be responsive to changes in needs over time, accessible to consumers of services for as long as they are required, and designed to be directed and customized by users.

AN INVESTIGATION OF THE RELATIONSHIP AMONG SOCIAL SUPPORT, FAMILY FUNCTIONING, DEPRESSION AND QUALITY OF LIFE TO MEDICAL ADHERENCE IN CARDIAC REHABILITATION (CR) PATIENTS

Rationale: Adherence with medical therapy has been shown to be a concern with patients. Although the effectiveness of CR is well-documented, less than one-third of eligible patients currently take advantage of CR services (AACVPR, 1999). Although there is information available regarding adherence-enhancing strategies while in CR (Oldridge & Jones, 1983), little information is available about which psychosocial variables or combination of variables influence participation. The purpose of this study is to identify psychosocial variables that may predict participation in CR. Methods: Two hundred sixty patients from a mid-western, medium sized hospital that were diverse in age, cardiac diagnosis, and gender participated in this research. The sample included 75 women and 185 men who had registered for CR orientation before release from the hospital. Of these 260 patients, 130 (50%) participated in CR. One hundred patients and 85 primary support persons completed the ENRICHD Social Support Inventory (ESSI) and the McMaster Family Assessment Device (FAD). Additionally, the 100 patients completed the BDI and SF-36. Results: Fifty-seven patients entered CR within two months of hospitalization and 43 did not. Seventy five percent were married and 25% were living alone. No statistically significant differences between those who attended and those who did not attend CR were found. Additionally, mean scores for both groups suggest that social support and family functioning were normal for patients and their significant others. Patients in both groups denied depression and scored in the average range on physical and mental composites of the SF-36. Conclusion: Social support, family functioning, depression and quality of life did not predict participation in CR in this sample. Perhaps researchers should search for other variables that may help in predicting participation in CR.

How stroke survivors and primary support persons experience nurses in rehabilitation.

The role of nursing in rehabilitation has been studied from various perspectives. This study explored experiences with nursing care in rehabilitation from the perspective of stroke survivors and their primary support persons (PSP). The sample consisted of six stroke survivors and seven primary support persons. Through in-depth phenomenological interviews, participants related the experiences with nursing care that stood out for them. The experience was conceptualized as a two-dimensional continuum from helpful to adversarial, with none of the participants articulating a therapeutic presence from nurses. Implications for nursing are explored.

Transition to home care after stroke: depression, physical health, and adaptive processes in support persons.

A longitudinal design was used to examine adaptation in primary support persons (PSP) of stroke survivors during the transition from hospitalization (T1) to home care (T2). The major purposes of the study were (a) to examine changes in depression, physical health, and contextual and coping factors from hospitalization of the stroke survivor through the first 6-10 weeks of home care; and (b) to identify predictors of depression. Data (N = 136) were collected on depression, physical health, background, survivor illness, and social environmental variables; appraisal of impact; social support resources; and coping skills. Reduction in mean PSP depression was significant at T2, but the change in physical health was not significant. Significant changes occurred in survivor function, family functioning, and three of six coping skills. Hierarchical multiple regression analyses were used to predict depression. T1 variables accounted for 29% of the variance in T1 PSP depression, with gender and appraisal of impact the strongest of seven predictors. T1 depression, T2 health, family functioning, and avoidance coping were the strongest of seven predictors, explaining 50% of the variance in T2 depression. Findings highlight the importance of maintaining caregiver health and preventing depression and identify variables to target for the reduction of PSP depression.

Transformation of the Relationship: The Experience of Primary Support Persons of Stroke Survivors

The primary support persons (PSPs) of stroke survivors are faced with many challenges as they help reintegrate the stroke survivor's life, as well as their own. Because it often is the PSP with whom nurses negotiate goals, teach, and counsel, it is important for nurses to understand the stroke experience from the PSP's perspective. The purpose of this study was to investigate the quality, or nature, of life as experienced by PSPs of stroke survivors. The qualitative design for this study was an existential-phenomenological approach, focusing on meaning. This involved an analysis of in-depth phenomenological interviews of 10 PSPs of stroke survivors. The experience of being a PSP of a stroke survivor is one grounded in the relationship in time. From this ground emerges themes of fragility, vigilance, and loss/responsibility. These themes help define the essence of the experience, which is a transformation of the relationship. The findings provide nurses with an understanding of the PSP's experience, and thus a foundation upon which to provide holistic care for the stroke survivor and family.

Concordance in the face of a stressful event: when do members of a dyad agree that one person supported the other?

Students reported behaviors they expected from a primary support persons in response to an upcoming exam. After the exam, students and support persons independently reported behaviors the supporter provided. There was only moderate agreement within dyads about the occurrence of supportive behaviors (kappa = .39). Dyad intimacy, fulfilled expectancies, student and supporter social competence, and commal orientation all were associated with greater concordance. There was also greater agreement on behaviors rated by judges as helpful than harmful and in dyads that included a woman than in man-man dyads. Greater dyad intimacy and more fulfilled expectancies accounted for why there was greater concordance in dyads that included a women, and more fulfilled expectancies accounted for why there was greater concordance on positive than negative behaviors.