Purpose: To collect and analyze participant demographic information and explore use of instruments to measure perceived social support and quality of life at a local cancer support program. Specific objectives included:
1. Gather and analyze participant demographic information and program utilization by participants for a non-profit cancer support agency.
2. Assess the extent to which those using the support programs experience perceived social support (PSS) and quality of life (QOL).
3. Assess the utility of the survey process and selected instruments to guide program planning.
Background: Obtaining the diagnosis of cancer is traumatic, but support groups assist in emotional healing among group members. There is strong evidence correlating support group participation with PSS and QOL. The Wilson and Cleary model of QOL clearly links social support and QOL and provided the conceptual framework for this project.
Methods: A survey for self-reported participant demographics, support activities, QOL scores, and PSS scores was implemented. Both online and pencil and paper surveys were available. Instruments included the Flanagan Quality of Life Scale (Cronbach’s α = .82 to .92) and the Multidimensional Scale of Perceived Social Support Scale (Cronbach’s α = 0.91) and a demographic survey created for this project.
Outcomes: All but one survey was completed online (n=48). Respondents were primarily white, female, cancer free at the time of the survey, and over the age of 55. QOL and PSS scores within this sample emulated previous research of correlations between instruments and people with chronic illnesses.
Conclusion: Correlations of sample demographics and instrument scores reflected current literature; this project validates an effective and affordable means to evaluate program effectiveness. Future use of the survey is to better tailor services to meet the objectives of the agency to improve QOL for all individuals affected by cancer.
Keywords: Cancer, support group, quality of life, perceived social support
Children with congenital heart disease (CHD) are at increased risk for psychosocial issues (PSI), decreased quality of life (QOL), and decreased resilience. The purpose of this project was to implement a screening protocol for PSI, QOL, and resilience, with appropriate psychosocial referral for children with CHD.
A pilot protocol was implemented to screen children with CHD, aged 8-17 years, and parents, for resilience, QOL, and PSI. Referrals for psychosocial services were made for 84.2% of children screened (n = 16) based on scoring outcomes. Statistically significant differences in the parents and children’s resilience mean scores were noted. Higher parental scores may indicate that parents believe their children are more resilient than the children perceive themselves to be.
Early identification of concerns regarding QOL, resilience, and PSI in children with CHD can provide ongoing surveillance, while affording opportunities for improved communication between providers, parents, and children. Routine screening and longitudinal follow-up is recommended.
Methods: Primary care providers have an opportunity to screen for sleep disorders as part of the intake process during an office visit. The Functional Outcomes of Sleep Questionnaire (FOSQ), has been proposed as guide to determine if a sleep disorder is affecting quality of life. This descriptive study randomly recruited 20 participants from a community health center. A 10-question survey was given to individuals over the age of 18 who can write and speak English and either have a body mass index (BMI) over 30, hypertension (HTN) or diabetes type II (DMII). Demographic information evaluated included age, gender, HTN, DMII, BMI>30, marital status, sleeping alone, employment type, race, type of insurance, how many times do they wake up at night, the average number of hours slept per night and does the person work night shift.
Results: The study used a qualitative approach with a descriptive methodology; statistical analysis consisted of proportions, means and standard deviation to describe the study population. Participant age ranged from 33 to 72 years (M=50.1, SD= 11.32). Sixty percent were both female and married/living with partner. Despite being married/living with partner, 50% slept alone. A Mann-Whitney U test showed that there was a significant difference in four of the questions in the FOSQ-10 in which functional outcomes were not affected by being sleepy or tired.
Conclusion: The FOSQ-10 may serve a role in identifying patients who might benefit from a sleep study. The inclusion of a sleep disorder screening tool may increase the specificity and sensitivity of the intervention and the ability to yield data that will objectively measure disordered sleep.
Methods: Twenty-four members of a PD specific wellness center in the United States were recruited to participate in a nurse navigation program for a 12-week period. The intervention period included an initial needs assessment, ten individual 45-minute sessions focused on specific aspects of PD wellness, and a concluding visit. Results: There was a significant decline in quality of life based on average PDQ-39 scores for the participants in January 2019 (M =24.44, SD=16.66) compared to January 2018 (M=20.11, SD =12.78) where higher scores signify worse quality of life; t(23)-4.329 p=0.025. Average self-efficacy for managing chronic disease pre-intervention scores (M=6.58, SD=1.70) verses post-intervention scores (M=7.44, SD=1.48) showed a significant increase in self-efficacy with a medium effect size; t(23)-0.854 p=0.016, d=0.54. Additionally, unique satisfaction surveys showed high satisfaction with nurse navigation throughout the participant sample and wellness center staff members.
Conclusions: A nurse navigation program focusing on specific aspects of PD management can help improve participant’s confidence in self-management of PD despite disease progression. Additionally, nurse navigation for people with PD was associated with high satisfaction among participants and staff members of a PD wellness center.
In “The Social and Psychological Impact of Endometriosis on Women’s Lives: A Critical Narrative Review,” hereafter “Social and Psychological Impact of Endometriosis,” authors Lorraine Culley, Caroline Law, Nicky Hudson, Elaine Denny, Helene Mitchell, Miriam Baumgarten, and Nicholas Raine-Fenning review the extent at which endometriosis results in a negative quality of life for affected women. Endometriosis is a condition characterized by the growth of cells similar to that of the endometrium, or the tissue that lines the uterus, outside of the uterus, and can cause heavy menstrual periods, pain, and infertility. Such symptoms can impact how women balance romantic or sexual relationships, due to the fact that endometriosis can cause chronic pelvic pain and pain during sexual intercourse. The authors found that women living with endometriosis are more likely to experience depression or anxiety, and conclude that the lack of both overall academic research and factual information given to women at diagnosis results in negative effects on their psychological wellbeing.