Enabling mutual helping? Examining variable needs for facilitated peer support

Objective

To examine uses of peer support among people living with a urological cancer.

Methods

26 qualitative interviews investigating experiences of needing and receiving information and support among people who had and who had not used a new urological cancer centre and its various peer support opportunities.

Results

Study participants reported varied needs for engagement with facilitated peer support, and suggested these depended on the severity and burden of their disease and treatment, the support they derived from existing networks, and their sense of coping. A minority reported avoiding speaking with other patients in order to protect their own or the other patients’ emotional wellbeing.

Conclusion

Desire for facilitated peer support is variable, and both giving and receiving support may have negative as well as positive consequences. These may depend on the nature of social comparisons that peer support interventions prompt, and the varying ways people interpret these.

Practical implications

Services offering facilitated peer support should recognise people's variable and contingent needs for support, and acknowledge the potential disadvantages of facilitated peer support for some patients.     

Decision support needs for shared clinical decision-making regarding HPV vaccination among adults 27–45 years of age

ObjectiveIdentify HPV information needs and shared clinical decision-making preferences among adults 27–45 and describe differences in needs and preferences among underserved and vulnerable populations.MethodsParticipants 27–45 years old with no history of HPV vaccination completed a cross-sectional web-based survey between April-May 2020 (N = 702). Preferred role in shared clinical decision making was described across demographic groups and sociodemographic correlates of HPV vaccine information needs.ResultsMost (77.6%) reported a preference to make a medical decision on their own or after consulting with a healthcare provider, while the remaining respondents preferred to make a joint decision (17.0%) or for their doctor to make the decision (5.4%). Over 80% needed more information about safety, effectiveness, personal benefit, provider recommendation, side effects, and risks. Education was the strongest demographic factors associated with higher information needs (p<0.05).ConclusionThe majority of individuals across demographic groups were individually focused with regard to their healthcare decisions and wanted more information about HPV vaccine safety, side effects, and risks, in addition to personalized information about benefits from HPV vaccination.Practical implicationsPatient-centered interventions are needed to engage adults in shared decision-making regarding HPV vaccination.     

Inventory of oncologists’ unmet needs for tools to support decision-making about palliative treatment for metastatic colorectal cancer

Background

Decision-making about palliative care for metastatic colorectal cancer (mCRC) consists of many different treatment-related decisions, and there generally is no best treatment option. Decision support systems (DSS), e.g., prognostic calculators, can aid oncologists’ decision-making. DSS that contain features tailored to the needs of oncologists are more likely to be implemented in clinical practice. Therefore, our aim is to inventory colorectal cancer specialists’ unmet decision support needs.

Methods

We asked oncologists from the Dutch colorectal cancer group (DCCG), to participate in an online inventory questionnaire on their unmet decision support needs. To get more in-depth insight in required features of the DSS they need, we also conducted semi-structured telephone interviews.

Results

Forty-one oncologists started the inventory questionnaire, and 27 of them completed all items. Of all respondents, 18 were surgeons (44%), 22 were medical oncologists (54%), and 28 (68%) had more than 10?years of experience treating mCRC. In both the inventory questionnaire and interviews, respondents expressed a need for an overarching DSS incorporating multiple treatment options, and presenting both the treatment benefits and harms. Respondents found it relevant for other outcomes, such as cost-effectiveness of treatment or quality of life, to be incorporated in DSS. There was also a wish for DSS incorporating an up-to-date “personalized” overview of the ongoing trials for which a specific patient is eligible.

Conclusions

Experienced oncologists indicate that their treatment advice is currently almost solely based on the available clinical guidelines. They experience a lack of good quality DSS to help them personalize their treatment advice. New tools integrating multiple treatment options and providing a broad range of clinically relevant outcomes are urgently needed to stimulate and safeguard more personalized treatment decision-making.

     

Does co-morbid depressive illness magnify the impact of chronic physical illness? A population-based perspective

OBJECTIVE: To examine the relative and combined impact of depressive and chronic physical conditions on functional status and health-care use in the general population. METHOD: Canadian, representative, population-based cross-sectional survey (n=130,880). Major depressive disorder (MDD) in the past 12 months was assessed by structured interview, and physical disorders, activity reduction, role impairment and work absence by self-report. The relative impact of MDD and six common chronic physical illnesses (asthma, arthritis, back problems, chronic obstructive pulmonary disease, heart disease and diabetes) was estimated using multivariate regression, adjusting for sociodemographic characteristics and overall chronic physical illness burden. RESULTS: After adjusting for sociodemographic characteristics, alcohol dependence and chronic physical illness burden, the presence of co-morbid MDD was associated with significantly greater (approximately double the) likelihood of health-care utilization and increased functional disability and work absence compared to the presence of a chronic physical illness without co-morbid MDD. This impact of MDD was seen across each of the six chronic physical illnesses examined in this study, with the strongest associations seen for work absence. CONCLUSIONS: These observations confirm prior findings of a strong association at the population level between major depression and health-care use and role impairment among persons with chronic physical disorders. They also point to the significant impact of co-morbid major depression on health-care seeking, disability and work absence in persons with chronic physical illness, underscoring the need for greater efforts to design and test the impact of detection and treatment programs for such individuals.     

Does meeting needs improve quality of life?

BACKGROUND: This study investigated the relationship between patient-rated unmet needs and subjective quality of life using routine outcome data. METHODS: 265 mental health service patients from South Verona were assessed using the Camberwell Assessment of Need, the Lancashire Quality of Life Profile, and other standardised assessments of symptoms, disability, function and service satisfaction. At 1-year follow-up, 166 patients were still in contact, of whom 121 patients (73%) were re-assessed. RESULTS: Higher baseline quality of life was associated with being male, a diagnosis of psychosis, higher disability, higher satisfaction with care, fewer staff-rated or patient-rated unmet needs, and fewer patient-rated met needs (accounting for 40% of the variance). Specifically, fewer baseline patient-rated unmet needs were cross-sectionally associated with a higher quality of life (B = -0.08, 95% CI -0.12 to -0.04). Apart from its baseline value, the only baseline predictor of follow-up QoL was patient-rated unmet need (B = -0.08, 95% CI -0.21 to -0.09), accounting for 58% of the variance in follow-up quality of life. Graphical chain modelling confirmed this association. CONCLUSIONS: The association between high numbers of unmet needs and low subjective quality of life appears increasingly robust across several studies. Future research will need to investigate whether changes in needs precede changes in quality of life. This study provides further evidence that a policy of actively assessing and addressing patient-rated unmet needs may lead to improved quality of life.     

Who supports the support workers? Cross-sectional survey of support workers' experience and views

Support groups provide information and emotional support to families. Despite a recent growth in the number and size of these groups, there are no formal structures in place to provide support for the support worker. We performed a cross-sectional survey using a self-completion postal questionnaire, with the aim of identifying the structure, training needs and support given to workers. The participants were support workers from 112 United Kingdom-based organisations listed on the 'Contact a Family' website (www.cafamily.co.uk). We received 104 replies from 50/112 organisations (44%). Of these, 94/104 (90%) worked from home as volunteers. Two-thirds, 69/104, admitted times when they struggled to cope. A total of 43 (41%) admitted occasions of concern over the care given by a client to their affected relative. No group employed a professional to act in a clinical supervisory role. Our study suggests that support workers are highly committed to their role; these workers need support to ensure that they give appropriate advice under difficult circumstances.     

“Understand your illness and your needs”: Assessment-informed patient education for people with multiple functional somatic syndromes

ObjectivesPatients suffering from multiple functional somatic syndromes (FSS) such as fibromyalgia, chronic fatigue syndrome, or irritable bowel syndrome, often lack both a clear diagnosis and tangible illness explanations, which is a barrier for treatment engagement. We tested a short-term intervention taking the unifying concept of Bodily Distress Syndrome (BDS) as a point of departure. The intervention consisted of a clinical assessment, group-based patient education, and one follow-up consultation.Methods174 patients were included and received questionnaires at baseline, after clinical assessment, after patient education, and median 19 weeks after baseline. Data were analyzed using random effects models and simple t-tests. Qualitative data were thematically analyzed.ResultsWe found small reductions in symptom levels, considerable reductions in illness worry, and improvement of illness perceptions and illness-related behaviors. Overall, patients evaluated the intervention positively and expressed high expectations for further treatment. Qualitative results mainly supported these findings.ConclusionTargeting illness perceptions through patient education is crucial to obtain patient engagement in self-help management or further treatment. This may lead to improved outcomes.Practical implicationsPhysicians in primary and secondary care should strive to give patients with multiple FSS a clear understanding that their various FSS diagnoses are related and provide tangible illness explanations.     

Did schizophrenia change the course of English history? The mental illness of Henry VI

Henry VI, King of England, at age 19 founded Eton College and King's College, Cambridge. At 31 he had a sudden, dramatic mental illness in which he was mute and unresponsive. Before, he had been paranoid, grandiose, and indecisive. After, he was apathetic with deterioration of ability, drive, interest and self-care, and hallucinations and religious delusions. This illness, which is consistent with a diagnosis of schizophrenia, robbed Henry of his personality, his crown, his wife, his only son, and his life. It led to three decades of brutal fighting for the crown (the 'Wars of the Roses') that resulted in a new dynasty with a dramatic impact on the country: the Tudors, Henry VIII, and Elizabeth I and their descendants. Henry's story illustrates how schizophrenia can devastate individuals and families and change the course of history and yet it raises questions about how achievement and illness are related.     

Do physicians value decision support? A look at the effect of decision support systems on physician opinion

OBJECTIVE: Clinical decision support systems are on the verge of becoming routine software tools in clinical settings. We investigate the question of how physicians react when faced with decision support suggestions that contradict their own diagnoses. METHODOLOGY: We used a study design involving 52 volunteer dermatologists who each rated the malignancy of 25 lesion images on an ordinal scale and gave a dichotomous excise/no excise recommendation for each lesion image. After seeing the system's rating and excise suggestions, the physicians could revise their initial recommendations. RESULTS: We observed that in 24% of the cases in which the physicians' diagnoses did not match those of the decision support system, the physicians changed their diagnoses. There was a slight but significant negative correlation between susceptibility to change and experience level of the physicians. Physicians were significantly less likely to follow the decision system's recommendations when they were confident of their initial diagnoses. No differences between the physicians' inclinations to following excise versus no excise recommendations could be observed. CONCLUSION: These results indicate that physicians are quite susceptible to accepting the recommendations of decision support systems, and that quality assurance and validation of such systems is therefore of paramount importance.     

Cardiovascular? responses to mental activation of social support schemas

While perceived social support appears to be associated with buffered cardiovascular reactivity to short-term stressors, its impact on cardiovascular recovery is less clear. This relationship might be affected by trait hostility, with hostile individuals benefiting less from social support. However, despite the possibility that support provision might enhance well-being, limited empirical work has manipulated this in a laboratory context. The present study sought to investigate whether mentally activated support provision and support receipt influenced cardiovascular recovery from cognitive stress. Systolic blood pressure, diastolic blood pressure, heart rate, cardiac output, and total peripheral resistance were monitored continuously in a laboratory following exposure to a short-term cognitive stressor. Mixed factorial analyses of variance revealed that inducing thoughts of support provision resulted in elevated post-stressor systolic and diastolic blood pressure responses (p=.03; p=.004) in comparison to thoughts of support receipt or non-supportive social contact. Furthermore, these elevations were most pronounced for individuals high in trait hostility. From this study, support provision when already cognitively and physiologically stressed appears to be deleterious rather than beneficial for cardiovascular function. Moreover, individuals high in trait hostility may be particularly disadvantaged by providing support in everyday life.     

Long-term effects of a group support program and an individual support program for informal caregivers of stroke patients: which caregivers benefit the most?

In this article, we report the long-term outcomes of an intervention for informal caregivers who are the main provider of stroke survivors' emotional and physical support. Based on the stress-coping theory of Lazarus and Folkman two intervention designs were developed: a group support program and individual home visits. Both designs aimed at an increase in caregivers' active coping and knowledge, reducing caregivers' strain and improving well-being and social support. Caregivers were interviewed before entering the program, and 1 and 6 months after completion of the program. After 6 months, 100 participants remained in the group program, 49 in the home visit program, and 38 in the control group. Multiple stepwise regression analysis was used to determine the effects of the interventions. In the long-term, the interventions (group program and home visits together) contributed to a small to medium increase in confidence in knowledge and the use of an active coping strategy. The amount of social support remained stable in the intervention groups, whereas it decreased in the control group. The same results were found when only the group program was compared with the control group. However, no significant differences between the home visit group and the participants in the group support program were found. Younger female caregivers benefit the most from the interventions. They show greater gains in confidence in knowledge about patient-care and the amount of social support received compared with other caregivers.     

Mental illness and/or mental health? Investigating axioms of the complete state model of health

A continuous assessment and a categorical diagnosis of the presence (i.e., flourishing) and the absence (i.e., languishing) of mental health were proposed and applied to the Midlife in the United States study data, a nationally representative sample of adults between the ages of 25 and 74 years (N = 3,032). Confirmatory factor analyses supported the hypothesis that measures of mental health (i.e., emotional, psychological, and social well-being) and mental illness (i.e., major depressive episode, generalized anxiety, panic disorder, and alcohol dependence) constitute separate correlated unipolar dimensions. The categorical diagnosis yielded an estimate of 18.0% flourishing and, when cross-tabulated with the mental disorders, an estimate of 16.6% with complete mental health. Completely mentally healthy adults reported the fewest health limitations of activities of daily living, the fewest missed days of work, the fewest half-day work cutbacks, and the healthiest psychosocial functioning (low helplessness, clear life goals, high resilience, and high intimacy).     

Speaking of illness: Issues of first generation Canadian women—Implications for patient education and counseling

Based upon my research with first generation Canadian women who have come from Asia, I discuss the issues in women's lives that influence how they manage a chronic illness. I argue that women's relations with health care providers, the organization of the health care system, and structural constraints, especially for those women in the lower echelons of the labour force, profoundly influence the illness experience. Taking this, as the starting point, I proceed to examine the implications for education and counseling. I propose a model for counseling that begins with a critical examination, by health professionals, of their own `culture of health', and that acknowledges the knowledge and wisdom of women. I suggest that a pedagogical relationship between health care professionals and women can be a site for the development of transformative knowledge and the empowerment of women.     

Mismatch between self-reported quality of life and functional assessment in acute mania: a matter of unawareness of illness?

BACKGROUND: Studies addressing self-reported quality of life (QoL) in acute mania are scarce and inconsistent. While it has been suggested that there is some disagreement between objective measures and subjective QoL as reported by acutely manic patients, this issue has not been systematically studied. This study aims to investigate the self-reported QoL in manic, depressed, and euthymic BD subjects, as compared to matched healthy controls. METHODS: One-hundred and twenty type-I bipolar patients (40 manic, 40 depressed, and 40 euthymic) and 40 matched controls were studied. Self-reported QoL was assessed using the World Health Organization's Quality of Life Instrument-Short Version (WHOQOL-BREF). Objective functioning was assessed using the Global Assessment of Functioning (GAF), and depressive and manic symptoms were assessed using the Hamilton Depression Rating Scale-17 items (HDRS) and the Young Mania Rating Scale (YMRS), respectively. RESULTS: Manic patients presented the lowest GAF measures but reported same overall QoL as euthymic patients and controls, and better QoL than depressed patients. Within the manic subgroup, there was a significant inverse correlation between psychological QoL and GAF scores (r=-0.54; p=0.001). LIMITATIONS: The cross-sectional design and the lack of control for potential comorbid conditions are the major limitations of the present study. CONCLUSIONS: Our findings suggest that this mismatch between objective and subjective measures during acute mania may be associated with a lack of insight or awareness of their own illness.