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.

     

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.

     

Filial piety and parental responsibility: an interpretive phenomenological study of family caregiving for a person with mental illness among Korean immigrants

Background

Despite the strong influence of culture on family involvement in disease management, few studies have examined how immigrant families care for persons with mental illness. The purpose of this study was to examine how immigrant families organize their world to care for a mentally ill person in the United States. The current analysis focused on how Confucian notions of filial piety and parental obligation shape caregiving in Korean immigrant families.

Methods

Participants in this interpretive phenomenological study were comprised of six Korean immigrant women caring for a family member with mental illness. Participants provided narratives that illustrate challenges and opportunities in caring for their mentally ill family member.

Results

Three family caregiving patterns were discerned. Insulating from the outside world describes a family’s effort to accept a member's illness and to manage it within the family. Prioritizing education over well-being concerns parental commitment to the Confucian priority of educating one’s children. Reciprocating the sacrifice describes how a family adapts and enacts filial piety.

Conclusion

The findings of this study warrant further study to examine the influence of Confucianism among Korean American families. The three patterns of caregiving are strongly aligned with Confucian notion of family and family engagement. These patterns may help health providers to anticipate the needs of and provide individualized, culturally appropriate mental health care for patients with mental illness and their families of Korean origin.

     

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.

     

Caregivers’ information needs and their ‘experiences of care’ during treatment are associated with elevated anxiety and depression: a cross-sectional study of the caregivers of renal cancer survivors

Purpose

This study aims to examine the unmet needs and psychological distress (anxiety and depression) in family caregivers of renal cell carcinoma survivors.

Methods

A cross-sectional study design was used. Unmet needs were assessed with the Supportive Care Needs Survey-Partners and Caregivers (SCNS-P&C) questionnaire, and psychological distress was measured with the Hospital Anxiety and Depression Scale (HADS) in a telephone survey of 196 caregivers of renal cell carcinoma (RCC) survivors. Chi-square tests examined bivariate relationships, and multivariate logistic regression examined the associations between anxiety and depression and of unmet needs with caregivers’ experience of patients’ care, time spent caregiving, caregivers’ demographic characteristics and patients’ disease stage.

Results

Sixty-four percent of caregivers had at least one low, moderate or high unmet need, with 53 % reporting at least three needs and 29 % reporting 10 or more unmet needs (median 2, range 0–38). Elevated anxiety (HADS-A?>?8) and depression (HADS-D?>?8) were found in 29 and 11 % of the sample, respectively. Psychological and emotional needs were associated with advanced cancer stage (stages 3 and 4) (OR 3.07, 95 % CI 1.35–6.76) and with experience of care during surgery (OR 0.87, 95 % CI 0.78–0.99). Healthcare service needs were associated with time spent caregiving, with caregivers spending >1 h/day in the past week having three times higher odds (OR 3.44, 95 % CI 1.52–7.72) than those not spending any time. Odds of experiencing information needs were lower in caregivers who were in a relationship (OR 0.20, 95 % CI 0.04–0.83). Elevated anxiety (OR 1.59, 95 % CI 1.09–2.33) and depression (OR 2.02, 95 % CI 1.08–3.79) were associated with unmet information needs. Depression was also associated with experiences of care during treatment (OR 0.69, 95 % CI 0.49–0.96).

Conclusion

RCC caregivers’ unmet information needs are associated with elevated anxiety and depression. Improved experiences of cancer care are associated with lower odds of unmet needs and elevated depression in RCC caregivers.

     

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.

     

Headache disorder and the risk of dementia: a systematic review and meta-analysis of cohort studies

Background

Until now, headache disorders have not been established as a risk factor for dementia. The aim of this study was to determine whether headache was associated with an increased risk of dementia.

Methods

We systematically searched electronic databases, including PubMed, Embase, and Web of Science, for studies investigating the association between headache and dementia. We then conducted a meta-analysis to determine a pooled-effect estimate of the association.

Results

We identified 6 studies (covering 291,549 individuals) to investigate the association between headache and the risk of all-cause dementia or Alzheimer’s disease (AD). Pooled analyses showed that any headache was associated with a 24% greater risk of all-cause dementia (relative risk [RR]?=?1.24; 95% confidential interval [CI]: 1.09–1.41; P?=?0.001), and that any headache was not statistically significantly associated with an increased risk of AD (RR?=?1.47; 95% CI: 0.82–2.63; P?=?0.192).

Conclusions

Our results indicated that any headache was associated with an increased risk of all-cause dementia. However, additional studies are warranted to further confirm and understand the association.

     

Olanzapine vs haloperidol: treating delirium in a critical care setting

Objective

To compare the safety and estimate the response profile of olanzapine, a second-generation antipsychotic, to haloperidol in the treatment of delirium in the critical care setting.

Design

Prospective randomized trial

Setting

Tertiary care university affiliated critical care unit.

Patients

All admissions to a medical and surgical intensive care unit with a diagnosis of delirium.

Interventions

Patients were randomized to receive either enteral olanzapine or haloperidol.

Measurements

Patient’s delirium severity and benzodiazepine use were monitored over 5 days after the diagnosis of delirium.

Main results

Delirium Index decreased over time in both groups, as did the administered dose of benzodiazepines. Clinical improvement was similar in both treatment arms. No side effects were noted in the olanzapine group, whereas the use of haloperidol was associated with extrapyramidal side effects.

Conclusions

Olanzapine is a safe alternative to haloperidol in delirious critical care patients, and may be of particular interest in patients in whom haloperidol is contraindicated.

     

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.

     

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.

     

A qualitative study exploring parents’ experiences with epinephrine use for their child’s anaphylactic reaction

Background

Children with life threatening food allergies live with the constant threat of a fatal reaction, and caregivers must always be prepared to treat with an epinephrine auto-injector (EAI). This interpretive phenomenological study explored parents’ perceptions and lived experiences with prescribed EAI use for their child.

Methods

The purposive sample included ten parents of five children under 12 years of age, diagnosed with a food allergy and prescribed with an EAI who recently experienced anaphylaxis. Data sources included digitally-recorded semi-structured interviews and a reflexive journal.

Results

Eight main themes emerged: perception of anaphylaxis, life challenges, isolation, anxiety, hesitation, guilt, influence of health care professionals, and lessons learned. Parents uniformly described multiple life challenges and feelings of isolation, anxiety and hesitation during a reaction that lead to subsequent guilt.

Conclusions

Handling reactions correctly provided parents with confidence to treat subsequent reactions. Witnessing the effects of an EAI and receiving positive feedback from health care providers further strengthened their confidence to quickly and competently intervene in future reactions.

     

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.

     

Current and Emerging Treatment Modalities for Leber’s Hereditary Optic Neuropathy: A Review of the Literature

Introduction

The purpose of this review is to present the current and emerging treatment alternatives for Leber’s hereditary optic neuropathy (LHON), emphasizing the most recent use of idebenone and stem cells or gene therapy.

Methods

A comprehensive literature review was performed at the PubMed database regarding the various treatment modalities for LHON.

Results

Treatment modalities for LHON include nutritional supplements, activators of mitochondrial biogenesis, brimonidine, and symptomatic and supportive treatment, but nowadays attention is being paid to idebenone and gene therapy or stem cells.

Conclusion

The treatment of LHON remains challenging, given the nature of the disease and its prognosis.

     

Satisfaction with cancer care among American Indian and Alaska Natives in Oregon and Washington State: a qualitative study of survivor and caregiver perspectives

Purpose

To better understand satisfaction with care among American Indian and Alaska Native (AI/AN) persons with cancer, we explored dimensions of the provider relationship that contributed to satisfaction among caregivers and survivors who received cancer treatment in Oregon and Washington State.

Methods

Between November 2011 and April 2013, the project team interviewed 11 caregivers and 71 AI/AN cancer survivors residing in Oregon and Washington State. Interview questions aimed to elicit participant experiences with care providers and factors associated with cancer care satisfaction. Interviews were analyzed using an inductive content analysis approach in which concepts were identified and themes derived from interview data.

Results

Three overarching themes, each with two sub-themes, emerged from the data: (1) universal factors: bolstering understanding, involvement, and empathy in care; (2) minority-specific factors: incorporating culture and community into care; and (3) AI/AN-unique factors: interacting with Indian health clinics and Indian Health Service (IHS).

Conclusions

The results of our study suggest that satisfaction with care among survivors and their caregivers must be examined within the context of culture and community, particularly among minority patients. Our study demonstrates providers’ critical role in ensuring AI/AN patients emerge satisfied with cancer treatment by honoring their AI/AN-specific needs, such as respect for integration of traditional healing modalities and navigation of specialty care coordination.

     

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.

     

“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.

     

Parents of preterm-born children; sources of stress and worry and experiences with an early intervention programme – a qualitative study

Background

Preterm-born children are at increased risk of adverse developmental outcomes, and their parents may experience increased stress levels. The Mother–Infant Transaction Program (MITP) is an early intervention that aims to enhance the parent–infant relationship and child development. The present study investigated differences in parents’ experience of stress and concerns about caring for their preterm-born child according to whether they participated in the programme. Parental satisfaction with the intervention was also explored.

Methods

As part of a follow-up study at 36 months, a randomized controlled trial of the MITP—14 parents of 11 children from the intervention group, and 17 parents of 14 children from the control group were interviewed by the use of semi-structured focus group interviews. The interviews were analysed thematically.

Results

The intervention parents reported that the knowledge, advice, guidance and emotional support given during the intervention made them feel less stressed and more confident, competent and secure caring for their preterm born child than they would otherwise have been. The control parents described feeling less involved and emotionally supported, and seemed more anxious about their child’s development than the intervention parents. All parents were vigilant and alert to their child’s needs and monitored developmental milestones carefully.

Conclusion

This qualitative exploration of the influences of the MITP revealed a positive impact of the intervention and seems to be an important educational and supportive initiative. Thus, reducing parental stress and enhancing confidence in the parental role.

     

Offene Arthrolyse des Kniegelenks

Background

Loss of range of motion of the knee joint causes significant disability. Surgical treatment should include arthroscopic as well as open arthrolysis procedures.

Objectives

Impairments of extension and flexion can have capsular or extra-articular origins in the musculature. The techniques of open capsulotomy and interventions on the proximal and distal extension apparatus are presented.

Methods

Discussion on the indications and surgical techniques for open arthrolysis of the knee joint are presented based on own results and the available literature.

Results

The established surgical techniques can significantly improve the range of motion considering the severity of this case group.

Conclusions

An exact analysis of the cause of knee stiffness is necessary. Only intra-articular problems can be arthroscopically treated and open techniques are indicated when the stiffness is caused by an extra-articular pathology. The techniques are established and reproducible.