Family caregiving challenges in advanced colorectal cancer: patient and caregiver perspectives

Purpose

Family caregivers of advanced colorectal cancer patients may be at increased risk for psychological distress. Yet their key challenges in coping with the patient’s illness are not well understood. Soliciting both patient and caregiver perspectives on these challenges would broaden our understanding of the caregiving experience. Thus, the purpose of this research was to identify caregivers’ key challenges in coping with their family member’s advanced colorectal cancer from the perspective of patients and caregivers.

Methods

Individual, semi-structured qualitative interviews were conducted with 23 advanced colorectal cancer patients and 23 primary family caregivers. Interview data were analyzed via thematic analysis.

Results

In nearly all cases, patient and caregiver reports of the caregiver’s key challenge were discrepant. Across patient and caregiver reports, caregivers’ key challenges included processing emotions surrounding the patient’s initial diagnosis or recurrence and addressing the patient’s practical and emotional needs. Other challenges included coping with continual uncertainty regarding the patient’s potential functional decline and prognosis and observing the patient suffer from various physical symptoms.

Conclusions

Findings suggest that eliciting the perspectives of both patients and caregivers regarding caregivers’ challenges provides a more comprehensive understanding of their experience. Results also point to the need to assist caregivers with the emotional and practical aspects of caregiving.

     

Unmet support needs of early-onset dementia family caregivers: a mixed-design study

Background

Though advances in knowledge and diagnostics make it possible today to identify persons with early-onset dementia or a related cognitive disorder much sooner, little is known about the support needs of the family caregivers of these persons. The aim of this study was to document the unmet support needs of this specific group of caregivers. This knowledge is essential to open avenues for the development of innovative interventions and professional services tailored to their specific needs.

Methods

This study was conducted using a mixed research design. Participants were 32 family caregivers in their 50s recruited through memory clinics and Alzheimer Societies in Quebec (Canada). The Family Caregivers Support Agreement (FCSA) tool, based on a partnership approach between caregiver and assessor, was used to collect data in the course of a semi-structured interview, combined with open-ended questions.

Results

The unmet support needs reported by nearly 70% of the caregivers were primarily of a psycho-educational nature. Caregivers wished primarily: (1) to receive more information on available help and financial resources; (2) to have their relatives feel valued as persons and to offer them stimulating activities adjusted to their residual abilities; (3) to reduce stress stemming from their caregiver role assumed at an early age and to have the chance to enjoy more time for themselves; and (4) to receive help at the right time and for the help to be tailored to their situation of caregiver of a young person.

Conclusions

Results show numerous unmet support needs, including some specific to this group of family caregivers. Use of the FCSA tool allowed accurately assessing the needs that emerged from mutual exchanges. Avenues for professional innovative interventions are proposed.

     

The influence of relationships on personhood in dementia care: a qualitative,hermeneutic study

Background

In dementia personhood can be understood as increasingly concealed rather than lost. The sense of being a person evolves in relationships with others. The aim of this study was to increase the understanding of the nature and quality of relationships between persons with dementia, family carers and professional caregivers and how these relationships influenced personhood in people with dementia.

Methods

This Norwegian study had a qualitative hermeneutical design based on ten cases. Each case consisted of a triad: the person with dementia, the family carer and the professional caregiver. Inclusion criteria for persons with dementia were (1) 67 years or older (2) diagnosed with dementia (3) Clinical Dementia Rating score 2 ie. moderate dementia (4) able to communicate verbally.A semi-structured interview guide was used in interviews with family carers and professional caregivers. Field notes were written after participant observation of interactions between persons with dementia and professional caregivers during morning care or activities at a day care centre. Data were analysed in two steps: (1) inductive analysis with an interpretive approach and (2) deductive analysis, applying a theoretical framework for person-centred care.

Results

Relationships that sustained personhood were close emotional bonds between family carers and persons with dementia and professional relationships between caregivers and persons with dementia.Relationships that diminished personhood were task-centred relationships and reluctant helping relationships between family carers and persons with dementia and unprofessional relationships between caregivers and persons with dementia.

Conclusions

A broad range of relationships was identified. Understanding the complex nature and quality of these relationships added insight as to how they influenced the provision of care and the personhood of persons with dementia. Personhood was not only bestowed upon them by family carers and professional caregivers; they themselves were active agents who gained a sense of self by what they said and did.

     

“I see myself as part of the team” – family caregivers’ contribution to safety in advanced home care

Background

The use of medical technology and the various contributing and interdepending human factors in home care have implications for patient safety. Although family caregivers are often involved in the provision of advanced home care, there is little research on their contribution to safety. The study aims to explore family caregivers in Home Mechanical Ventilation (HMV) safety experiences and how safety is perceived by them in this context. Furthermore, it seeks to understand how family caregivers contribute to the patients’ and their own safety in HMV and what kind of support they expect from their health care team.

Methods

An explorative, qualitative study was applied using elements from grounded theory methodology. Data were collected through individual interviews with 15 family caregivers to patients receiving HMV in two regions in Germany. The audiotaped interviews were then subject to thematic analysis.

Results

The findings shows that family caregivers contribute to safety in HMV by trying to foster mutual information sharing about the patient and his/her situation, coordinating informally health care services and undertaking compensation of shortcomings in HMV.

Conclusion

Consequently, family caregivers take on considerable responsibility for patient safety in advanced home care by being actively and constantly committed to safety work.Nurses working in this setting should be clinically and technically skilled and focus on building partnership relations with family caregivers. This especially encompasses negotiation about their role in care and patient safety. Support and education should be offered if needed. Only skilled nurses, who can provide safe care and who can handle critical situations should be appointed to HMV. They should also serve as professional care coordinators and provide educational interventions to strengthen family caregivers’ competence.

     

Can the caregiver replace his/her elderly cancer patient in the physician–patient line of communication?

Goals of works

Only few studies have focussed on the information needs of senior cancer patients. The aim of this study was to evaluate to what extent caregivers perceive their elderly cancer patients’ informational needs.

Materials and methods

Between June 2004 and February 2005, at the National Cancer Institute of Aviano (northern Italy), we asked 112 elderly cancer patients naïve for treatments (age >65 years) and their 112 accompanying family members to fill in a self-administered questionnaire exploring the patient’s information needs and his/her information-seeking behaviour.

Main results

Elderly patients (60 males and 52 females, mean age 72 years) were mostly affected by genital–urinary (27%) or breast/gynaecological (25%) cancer. Caregivers were usually females (71%), daughters/sons (45%) and/or partners (41%). The interobserver agreement for the information request regarding cancer diagnosis and disease management, for the selected information sources consulted to acquire knowledge and for the reasons for seeking further information between the elderly patients and their caregivers were unsatisfactory to poor.

Conclusions

Our results show that caregivers misunderstand the informational needs of their patients. Therefore, elderly patient information preferences cannot be predicted accurately by talking to relatives. The recommendation to oncologists is to be more responsive to the needs of both elderly cancer patients and their family members.

     

Agreement between personally generated areas of quality of life concern and standard outcome measures in people with advanced cancer

Purpose

People with advanced cancer experience different sequelae which have unique effects on quality of life (QOL). The patient-generated index (PGI) is a personalized measure that allows patients to nominate, rate, and value areas that have the most impact on QOL. Fatigue, pain, and aspects of physical function are among the top 10 areas with QOL impact. An area of validation that is lacking for the PGI is the extent to which spontaneously nominated areas of QOL that patients are concerned with, agree with ratings obtained from standard patient reported outcomes (PROs).

Methods

Data from 192 patients were used to compare ratings on fatigue, pain, and physical function obtained from PGI to those from standard outcome measures.

Results

Within one severity rating, agreement ranged from 32.1 to 76.9 % within the fatigue domain, 34.2 to 95.24 % for pain, and between 84.2 and 94.7 % for physical function. Of the 10 items where the PGI had the highest agreement, 7 came from the RAND-36. At the domain level, people nominating an area scored in the more impaired range on standard measures than people who did not.

Conclusion

PGI gives comparable information as do standard measures.

Implications for cancer

PGI provides important information to guide clinical care of the patient and also produces a legitimate total score suitable for research.

     

Promoting Patient and Family Partnerships in Ambulatory Care Improvement: A Narrative Review and Focus Group Findings

Introduction

Ambulatory practices that actively partner with patients and families in quality improvement (QI) report benefits such as better patient/family interactions with physicians and staff, and patient empowerment. However, creating effective patient/family partnerships for ambulatory care improvement is not yet routine. The objective of this paper is to provide practices with concrete evidence about meaningfully involving patients and families in QI activities.

Methods

Review of literature published from 2000–2015 and a focus group conducted in 2014 with practice advisors.

Results

Thirty articles discussed 26 studies or examples of patient/family partnerships in ambulatory care QI. Patient and family partnership mechanisms included QI committees and advisory councils. Facilitators included process transparency, mechanisms for acting on patient/family input, and compensation. Challenges for practices included uncertainty about how best to involve patients and families in QI. Several studies found that patient/family partnership was a catalyst for improvement and reported that partnerships resulted in process improvements. Focus group results were concordant.

Conclusion

This paper describes emergent mechanisms and processes that ambulatory care practices use to partner with patients and families in QI including outcomes, facilitators, and challenges.

Funding

Gordon and Betty Moore Foundation.

     

The Italian version of the FAMCARE scale: a validation study

Purpose

Evaluation of the quality of care is a key element that healthcare providers now take into consideration to meet patients’ needs, expectations, and values. The FAMCARE scale is one of the most important instruments available to assess the level of satisfaction about care received by patients and families. We describe the validation process used to develop an Italian version (IF) of the original FAMCARE scale for caregivers.

Methods

The IF was prepared according to standard guidelines for translation and transcultural adaptation of self-reported measures. The scale was self-administered to 132 informal caregivers of patients with cancer treated with curative and/or palliative care in a hospice, outpatient, or inpatient setting for at least 1 month. The participant group was composed of spouses (47.73 %), children (31.82 %), siblings (3.03 %), or other relatives (17.42 %). All participants simultaneously completed the EuroQol-5D (EQ-5D) questionnaire to test the construct validity. Twenty-two percent of randomly chosen participants re-completed the test after 1 month to evaluate IF test-retest stability.

Results

The IF showed a strong reliability with internal consistency [α = 0.93, confidence intervals (CI) = 0.91–0.95] and test-retest stability (Pearson r = 0.38; Kendall’s tau-b = 0,25; Spearman’s rho =0.34). Factor analysis identified four factors capable of explaining the 63 % total variance which did not change after the Varimax normalized rotation. Notwithstanding the lack of correlation with the VAS component of the EQ-5D questionnaire, our results highlighted robust psychometric properties of the IF.

Conclusions

IF is a valid translation of the FAMCARE scale and can be used to assess caregiver satisfaction within the Italian context of cancer palliative care.

     

Automatic adjustment of pressure support by a computer-driven knowledge-based system during noninvasive ventilation: a feasibility study

Objective

To evaluate the feasibility of using a knowledge-based system designed to automatically titrate pressure support (PS) to maintain the patient in a “respiratory comfort zone” during noninvasive ventilation (NIV) in patients with acute respiratory failure.

Design and setting

Prospective crossover interventional study in an intensive care unit of a university hospital.

Patients

Twenty patients.

Interventions

After initial NIV setting and startup in conventional PS by the chest physiotherapist NIV was continued for 45?min with the automated PS activated.

Measurements and results

During automated PS minute-volume was maintained constant while respiratory rate decreased significantly from its pre-NIV value (20?±?3 vs. 25?±?3?bpm). There was a trend towards a progressive lowering of dyspnea. In hypercapnic patients PaCO₂ decreased significantly from 61?±?9 to 51?±?2?mmHg, and pH increased significantly from 7.31?±?0.05 to 7.35?±?0.03. Automated PS was well tolerated. Two system malfunctions occurred prompting physiotherapist intervention.

Conclusions

The results of this feasibility study suggest that the system can be used during NIV in patients with acute respiratory failure. Further studies should now determine whether it can improve patient-ventilator interaction and reduce caregiver workload.

     

Informal caregivers of advanced-stage cancer patients: Every second is at risk for psychiatric morbidity

Purpose

Informal caregivers of advanced cancer patients are known to suffer from high distress due to their caregiving responsibilities. Nevertheless, a comprehensive evaluation of psychiatric morbidity is often missing in clinical practice due to time resources, and mental health problems may be unnoticed in this population. A feasible approach is needed to identify caregivers at risk for psychiatric disorders to offer targeted interventions and enhance their well-being.

Methods

This cross-sectional, multi-institutional study screened 345 caregivers of advanced cancer patients for psychiatric disorders (i.e., depression, anxiety, posttraumatic stress disorder, and alcohol abuse/dependence) and assessed factors potentially associated with mental health diagnoses (including socio-demographic factors, burden, hope, caring-related quality of life, and coping preferences).

Results

Overall, almost 52 % of participants had one or more suspected psychiatric disorders, with anxiety being the most prevalent. Perceived hope, higher burden, and more emotion-oriented coping were associated with psychiatric morbidity in this sample. Spouses and parents showed significantly more symptoms of psychiatric disorders than other relatives.

Conclusions

This study confirms the high risk of informal caregivers of advanced cancer patients to develop psychiatric disorders and suggests a practically feasible approach to identify at risk caregivers to offer support.

     

Low dose quetiapine induced galactorrhoea: a case report

Background

Quetiapine causes less prolactin elevation and/or galactorrhoea than other atypical antipsychotics.

Case Presentation

Ms AB had galactorrhoea and raised prolactin levels at only 100 mg of quetiapine daily.

Conclusion

Low dose quetiapine can also cause galactorrhoea.

     

Création d’un programme d’éducation thérapeutique en douleur chronique (PETDC) — Expérience Canadienne

Aims

Create an educational program in chronic pain (EPCP).

Material and methods

We used a four-step process to create the EPCP tailored to patient’s needs.

Results

Five groups of patients can benefit from the program annually. Based on their own assessment, patients stated that their knowledge of chronic pain improved between 2.8 to 24%. The satisfaction with the EPCP was 8.67/10.

Conclusion

Our EPCP helps patients gain and maintain the skills they need to best manage their lives with a chronic pain.

     

Using Patient Feedback to Optimize the Design of a Certolizumab Pegol Electromechanical Self-Injection Device: Insights from Human Factors Studies

Introduction

We incorporated patient feedback from human factors studies (HFS) in the patient-centric design and validation of ava^®, an electromechanical device (e-Device) for self-injecting the anti-tumor necrosis factor certolizumab pegol (CZP).

Methods

Healthcare professionals, caregivers, healthy volunteers, and patients with rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, or Crohn’s disease participated in 11 formative HFS to optimize the e-Device design through intended user feedback; nine studies involved simulated injections. Formative participant questionnaire feedback was collected following e-Device prototype handling. Validation HFS (one EU study and one US study) assessed the safe and effective setup and use of the e-Device using 22 predefined critical tasks. Task outcomes were categorized as “failures” if participants did not succeed within three attempts.

Results

Two hundred eighty-three participants entered formative (163) and validation (120) HFS; 260 participants performed one or more simulated e-Device self-injections. Design changes following formative HFS included alterations to buttons and the graphical user interface screen. All validation HFS participants completed critical tasks necessary for CZP dose delivery, with minimal critical task failures (12 of 572 critical tasks, 2.1%, in the EU study, and 2 of 5310 critical tasks, less than 0.1%, in the US study).

Conclusion

CZP e-Device development was guided by intended user feedback through HFS, ensuring the final design addressed patients’ needs. In both validation studies, participants successfully performed all critical tasks, demonstrating safe and effective e-Device self-injections.

Funding

UCB Pharma.

Plain Language Summary

Plain language summary available on the journal website.

     

Die Einbindung und Anwendung der Physiotherapie in der Hospiz- und Palliativversorgung

Background

Palliative care is an approach that improves the quality of life of patients with incurable and progressive illnesses; therefore, in these situations physiotherapy can play an important role.

Aim

This study was carried out to examine the integration and utilization of physiotherapy in palliative and hospice care services in Germany.

Methods

A cross-sectional survey including all palliative care units, specialized outpatient palliative care teams and hospices in Germany (n = 680) in 2013 was carried out.

Results

The response rate was 43.5?% (n = 296). Physiotherapy is predominantly applied in palliative care units (79?%) but rarely in hospices (38?%) and outpatient palliative care teams (30?%). A structured physiotherapeutic assessment is rarely carried out even on palliative care units (26?%). Positive effects of physiotherapy are especially described for symptoms, such as edema, pain, constipation and dyspnea.

Conclusion

Despite its significant potential to relieve symptoms, physiotherapy is not systematically integrated into palliative care practice in Germany.

     

A novel prospective descriptive analysis of nausea and vomiting among patients receiving gastrointestinal radiation therapy

Purpose

Nausea and vomiting are common side effects from radiotherapy that can interfere with gastrointestinal (GI) cancer patients’ quality of life (QOL). This study described the subjective experience of patients with radiation-induced nausea and vomiting (RINV) and its relation to QOL.

Methods

Forty-eight patients treated with abdominal radiotherapy alone or with concomitant chemoradiotherapy were followed in a prospective study. All episodes of nausea, vomiting, and antiemetic use were recorded daily for the treatment period and the week following completion of therapy. QOL was assessed weekly using the Functional Living Index—Emesis QOL Tool (FLIE) and the EORTC QLQ-C30 core questionnaire (C30).

Results

In total, 351 episodes of nausea severity, duration, onset time, and 154 outcomes of vomiting onset times and contents were documented. The median nausea severity experienced per episode was 5 (on a scale from 1 to 10), and the most common durations of nausea were 30 min or less and constant nausea all day and night. The most common location of nausea was the abdomen. Longer nausea duration, great nausea severities, and the location of nausea experienced had significant adverse relationships to multiple QOL items on both the FLIE and the C30. In addition, the onset timing and number of vomiting episodes were related to the majority of all FLIE and QOL scores.

Conclusion

Patient’s subjective experiences of RINV directly correlated to the worsening of QOL outcomes. The identification and amelioration of these RINV experiences could improve QOL.

     

Appraisals,perceived dyadic communication,and quality of life over time among couples coping with prostate cancer

Purpose

Little research has examined how prostate cancer patients’ and their spouses’ appraisals of illness and quality of life (QOL) interact with one another. This study examined the interdependent relationships between their appraisals of illness and QOL and if their perceived dyadic communication mediated these relationships.

Methods

We used the Actor-Partner Interdependence Mediation Model (APIMeM) approach to conduct a secondary analysis of longitudinal data from 124 prostate cancer patient-spouse dyads. We examined actor effects (each person’s influence on his/her own outcomes) and partner effects (each person’s influence on his/her partner’s outcomes). Appraisals of illness, perceived dyadic communication, and QOL were measured using Appraisal of Illness Scale, Lewis Mutuality and Interpersonal Sensitivity Scale, and Functional Assessment of Chronic Illness Therapy General Scale, respectively. Analyses controlled for effects of prostate cancer symptoms and demographic factors.

Results

Among actor effects, spouses with more negative appraisals at baseline perceived worse dyadic communication 4 months later (p < .05) and worse QOL 8 months later (p < .001). Patients and spouses who perceived more dyadic communication at 4 months had better QOL at 8 months (p < .01). Among partner effects, there was only weak evidence for an association between patient perceived dyadic communication at 4 months and better spouse QOL at 8 months of follow-up (p = .05). No mediation effects were found.

Conclusions

Patients’ and spouses’ appraisals of the illness and their dyadic communication were associated with their long-term QOL. Interventions that reduce negative appraisals of illness and promote dyadic communication may improve QOL for both patients with prostate cancer and their spouses.

     

On-patient see-through augmented reality based on visual SLAM

Purpose

An augmented reality system to visualize a 3D preoperative anatomical model on intra-operative patient is proposed. The hardware requirement is commercial tablet-PC equipped with a camera. Thus, no external tracking device nor artificial landmarks on the patient are required.

Methods

We resort to visual SLAM to provide markerless real-time tablet-PC camera location with respect to the patient. The preoperative model is registered with respect to the patient through 4–6 anchor points. The anchors correspond to anatomical references selected on the tablet-PC screen at the beginning of the procedure.

Results

Accurate and real-time preoperative model alignment (approximately 5-mm mean FRE and TRE) was achieved, even when anchors were not visible in the current field of view. The system has been experimentally validated on human volunteers, in vivo pigs and a phantom.

Conclusions

The proposed system can be smoothly integrated into the surgical workflow because it: (1) operates in real time, (2) requires minimal additional hardware only a tablet-PC with camera, (3) is robust to occlusion, (4) requires minimal interaction from the medical staff.