scholarly journals Cancer patients’ family members’ experiences of the information and support provided by healthcare professionals

2018 ◽  
Vol 78 (4) ◽  
pp. 416-427 ◽  
Author(s):  
Jacqueline F Lavallée ◽  
Sarah Grogan ◽  
Carol A Austin
Keyword(s):  
Cancer Patients ◽  
Information Acquisition ◽  
Healthcare Professionals ◽  
Family Members ◽  
Sources Of Information ◽  
Structured Interviews ◽  
Loved One ◽  
Critical Realist ◽  
Sensitive Topics ◽  
Data Collection And Analysis

Objectives: This qualitative study aimed to understand the experiences, information and support needs of family members of cancer patients and their satisfaction with the services provided to them as a family member. Design: Inductive qualitative and critical realist approach to data collection and analysis. Methods: Purposive sampling was used to identify family members of cancer patients. We conducted semi-structured interviews with 10 participants by means of email, enabling us to explore sensitive topics at a pace appropriate for each participant and gain rich sources of information. We analysed the data using an inductive thematic approach. Results: Three superordinate themes were identified: information acquisition, seeking support and family members’ experiences of cancer. Needs were high, and a complex relationship between information and support was apparent. Many participants felt dissatisfied with the support and information received as it was sometimes inconsistent, incorrect or vague, and some reported deterioration in their own health as a consequence. Online communities were reported as being informative and supportive as the participants felt they could relate to the firsthand experience of the other members. Conclusion: Improving healthcare professionals’ awareness of the type of information and support the family members need is vital for both family members and patients. There is a need for the development of educational and psychological interventions to assist family members in coping when a loved one is diagnosed with cancer, is undergoing or recovering from treatment, or is receiving palliative care.

Stress Encountered by Significant others of Cancer Patients Receiving Chemotherapy

1987 ◽  
Vol 17 (2) ◽  
pp. 151-167 ◽  
Author(s):  
Kay Hart
Keyword(s):  
Cancer Patients ◽  
Family Members ◽  
Significant Others ◽  
Stressful Events ◽  
Previous Experience ◽  
Stressful Event ◽  
Exploratory Research ◽  
Structured Interviews ◽  
Coping Responses ◽  
Significant Difference

This study was directed toward identifying and describing the perceived stress and coping responses of family and nonfamily significant others of cancer patients receiving chemotherapy. Identification of the similarities and differences among the responses given by family and nonfamily significant others was one of the primary purposes of this research. Using an exploratory research design, the investigator conducted structured interviews with one family and one nonfamily significant other identified in earlier interviews with twenty-five cancer patients receiving chemotherapy in ambulatory care settings. Significant others were asked to identify stressful events related to treatment factors, relationship factors, and perception of the patient's condition. Reported coping responses to events perceived as stressful were categorized into those behaviors that reduced or eliminated the stressful event or those that altered the appraisal of the event without changing the event itself. Statistical analyses revealed 1) no significant difference between the level of stress was expressed by family and nonfamily significant others; 2) significantly higher levels of stress were reported by female family members when compared to male family members; 3) significant others who had previous experience coping with cancer of a loved one reported higher levels of stress than persons without previous experience; 4) nonfamily members reported significantly higher levels of stress when the cancer patient lived with family; and 5) no relationship was demonstrated between level of stress and time since diagnosis of cancer.

scholarly journals Understanding care when cure is not likely for young adults who face cancer: a realist analysis of data from patients, families and healthcare professionals

BMJ Open ◽  
2019 ◽  
Vol 9 (1) ◽  
pp. e024397 ◽  
Author(s):  
Charlotte Kenten ◽  
Nothando Ngwenya ◽  
Faith Gibson ◽  
Mary Flatley ◽  
Louise Jones ◽  
...  
Keyword(s):  
Young Adults ◽  
Healthcare Professionals ◽  
Care Delivery ◽  
Family Members ◽  
Family Carers ◽  
Structured Interviews ◽  
Multiple Sources ◽  
Programme Theory ◽  
Realist Analysis ◽  
Palliative Care Services

ObjectivesTo understand the experiences of young adults with cancer for whom cure is not likely, in particular what may be specific for people aged 16–40 years and how this might affect care.DesignWe used data from multiple sources (semi-structured interviews with people with cancer, nominated family members and healthcare professionals, and workshops) informed by a preliminary programme theory: realist analysis of data within these themes enabled revision of our theory. A realist logic of analysis explored contexts and mechanisms affecting outcomes of care.SettingThree cancer centres and associated palliative care services across England.ParticipantsWe aimed for a purposive sample of 45 people with cancer from two groups: those aged 16–24 years for whom there may be specialist cancer centres and those 16–40 years cared for through general adult services; each could nominate for interview one family member and one healthcare professional. We interviewed three people aged 16–24 years and 30 people 25–40 years diagnosed with cancer (carcinomas; blood cancers; sarcoma; central nervous system tumours) with a clinician-estimated prognosis of <12 months along with nominated family carers and healthcare professionals. 19 bereaved family members and 47 healthcare professionals participated in workshops.ResultsData were available from 69 interviews (33 people with cancer, 14 family carers, 22 healthcare professionals) and six workshops. Qualitative analysis revealed seven key themes: loss of control; maintenance of normal life; continuity of care; support for professionals; support for families; importance of language chosen by professionals; and financial concerns.ConclusionsCurrent care towards end of life for young adults with cancer and their families does not meet needs and expectations. We identified challenges specific to those aged 16–40 years. The burden that care delivery imposes on healthcare professionals must be recognised. These findings can inform recommendations for measures to be incorporated into services.

Exploring the Barriers Related to the Healthcare System and Healthcare Professionals in Implementing Quality Intravenous Chemotherapy: A Qualitative Study

2021 ◽  
Author(s):  
shahin salarvand ◽  
Masoumeh Sadat Mousavi ◽  
Mohammad Almasian
Keyword(s):  
Cancer Patients ◽  
Family Caregivers ◽  
Healthcare System ◽  
Healthcare Professionals ◽  
Qualitative Content Analysis ◽  
Healthcare Providers ◽  
Routine Care ◽  
Structured Interviews ◽  
Intravenous Chemotherapy ◽  
Individualized Care

Abstract Purpose: This study aimed to explore barriers related to the healthcare system (HCS) and healthcare providers (HCPs) in implementing quality intravenous (IV) chemotherapy (CT) from the perspectives of cancer patients, family caregivers, and healthcare professionals.Methods: Using an explanatory descriptive qualitative method, this study was conducted in 2019. Forty-one participants (6 patients, 5 family caregivers, 12 oncologists, and 18 nurses) were selected through purposive sampling. In-depth semi-structured interviews were conducted to collect the data, which were analyzed using qualitative content analysis. Lincoln and Guba’s criteria of rigor were employed to ensure the trustworthiness of the study.Results: Data analysis showed two categories, each with three subcategories: Barriers related to HCPs that contains “educational and communication barriers”, “failure to establish trust” and “unskilled healthcare professionals”; Barriers related to the HCS, which consists of “inadequate physical and care infrastructures to provide services”, “lack of support in the disease trajectory from diagnosis to rehabilitation” and “mismanagement of CT wards/procedures”.Conclusion: The identification and removal of the barriers related to HCPs and HCS from routine care are crucial. Education of and communication with cancer patients and their family caregivers are two important pillars in the quality of intravenous chemotherapy (IV CT) and this education and communication should be based on individualized care and tailored to the unique needs of each patient.

scholarly journals A-148 The Experiences of Partners of Elite Athletes Diagnosed with Post-Concussion Syndrome (PCS)

2020 ◽  
Vol 35 (6) ◽  
pp. 942-942
Author(s):  
Bruger B
Keyword(s):  
Brain Injury ◽  
Current Literature ◽  
Elite Athletes ◽  
Sources Of Information ◽  
Structured Interviews ◽  
Text Data ◽  
Duration Of Symptoms ◽  
Loved One ◽  
Post Concussion Syndrome ◽  
Conventional Content Analysis

Abstract Objective This study explored partners’ experiences of caring for an elite athlete who has post-concussion syndrome (PCS) or lingering symptoms of concussion. Until this point, the concussion literature has focused mostly on experiences of athletes (McCrory et al, 2017) and caregivers of non-athletes with brain injury. Literature on partners of athletes with PCS is woefully underrepresented. The purpose of this study is to examine the experience of partners of elite athletes with PCS to add to current concussion and caretaker literature. Method Conventional content analysis of semi-structured interviews was used for the inductive identification of common themes in the participants experience, with the coding categories directly derived from the text data. Results Major themes created from the coding of interviews included a) the lack of literature available and provided to the general public on concussions and PCS is minimal, b) there is a sense of ambiguity for partners and their post-concussed loved ones regarding duration of symptoms and what to expect, c) partners turned to non-credible sources of information and at times, adding undue stress, and d) feeling as if the dynamics of their relationship had not changed, and if they had, quite minimally, following a concussion(s) sustained by their loved one. Evidence for mild caregiver burden was found and participants identified unexpected and exhausting emotional difficulties. Conclusion Findings were consistent with current literature on caregivers of non-athletes with brain injury. This study extended current literature to include literature on partners of athletes with PCS.

scholarly journals Humanization in the Intensive Care: perception of family and healthcare professionals

2017 ◽  
Vol 70 (5) ◽  
pp. 1040-1047 ◽  
Author(s):  
Flavia Feron Luiz ◽  
Rita Catalina Aquino Caregnato ◽  
Márcia Rosa da Costa
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
Public Hospital ◽  
Healthcare Professionals ◽  
Family Members ◽  
Structured Interviews ◽  
Porto Alegre ◽  
Level 3 ◽  
Objective Understanding ◽  
Care Perception

ABSTRACT Objective: Understanding perceptions of family members and healthcare professionals about humanization at the Intensive Care Unit (ICU) to direct it to an educational action. Method: Exploratory descriptive and qualitative study conducted in an ICU level 3 of a public hospital in Porto Alegre, RS, Brazil, with fourteen subjects, eight family members and six healthcare professionals. Data collection carried out through semi-structured interviews and focus group. Content Analysis was used. Results: Emerged categories were: welcoming; communication; ethical and sensible professionalism; unfavorable aspects; perception on humanization; and religiosity/spirituality. Final considerations: Although the subjects have expressed their perceptions about humanization in different ways, both groups pointed out the same needs and priorities to improve humanization in Intensive Care. From the results, we created a reflective manual of humanizing assistance practices for professionals, a board to facilitate communication of these professionals with patients and a guideline book for family members.

Double-edged MAiD death family legacy: a qualitative descriptive study

2020 ◽  
pp. bmjspcare-2020-002648
Author(s):  
Andrea N Frolic ◽  
Marilyn Swinton ◽  
Leslie Murray ◽  
Allyson Oliphant
Keyword(s):  
Family Members ◽  
Social Consequences ◽  
Main Theme ◽  
Structured Interviews ◽  
Loved One ◽  
Medical Assistance In Dying ◽  
Double Edge ◽  
Qualitative Descriptive ◽  
Conventional Content Analysis ◽  
Descriptive Approach

BackgroundIndividuals who accompany a loved one through medical assistance in dying (MAiD) have to live with the experience and the psychological, moral and social consequences of their involvement in the process long after the death occurs.AimTo explore the legacy of a MAiD death for individuals who accompanied a loved one through the process.DesignUsing a qualitative descriptive approach we conducted semi-structured interviews to collect data from family members who had accompanied a loved one through MAiD. Data were analysed using conventional content analysis.Setting/participants16 family members of 14 patients who received MAiD at a Canadian hospital with an interdisciplinary MAiD programme.ResultsThe main theme in the analysis is the opposing tensions experienced by individuals who accompany a loved one through a MAiD death, which we conceptualise as a double-edge experience. This double-edge experience is illustrated through four thematic opposing tensions: (1) support for patient autonomy and ambivalence about the MAiD choice, (2) gratitude for suffering relieved for loved one and grief for lost time with loved one, (3) time as a gift and time as a burden and (4) positive legacy and challenging bereavement experience.ConclusionThe nature of the MAiD experience for involved families is rooted in complexity, ambiguity and ambivalence and thus resists easy categorisation. Families would benefit from structured psychosocial and spiritual supports that acknowledge this complexity, along with MAiD-specific bereavement support following the death.

scholarly journals “It is the beautiful things that let us live”: How engaging in creative activities outside of standardized interventions helps family members of persons with Dementia

Dementia ◽  
2021 ◽  
pp. 147130122110418
Author(s):  
Fabian Hutmacher ◽  
Klara Schouwink
Keyword(s):  
Content Analysis ◽  
Qualitative Content Analysis ◽  
Family Members ◽  
Structured Interviews ◽  
Dementia Diagnosis ◽  
Loved One ◽  
Positive Effects ◽  
Wide Range

Creative activities can have profound positive effects on family members of persons with dementia. Typically, these effects have been studied in the context of standardized arts-based interventions. However, family members of persons with dementia may also engage in creative activities outside of standardized interventions. As these kinds of creative activities have not been investigated so far, the present study tried to fill this gap based on seven semi-structured interviews. The interviews were analysed using qualitative content analysis. The participants reported a wide range of activities that included, but were not limited to, prototypical creative activities such as making music and writing. Crucially, the positive effects extended beyond the experience of engaging in the activities themselves and also included significant changes in cognitions, emotions and behaviour that helped the participants to make meaning of the challenges and difficulties that are associated with the dementia diagnosis of a loved one.

SUSTAINING FAMILY ROUTINES AFTER TRANSITIONING INTO PARENTHOOD: COUPLES’ PERCEPTIONS OF ASSISTING FACTORS

2016 ◽  
Vol 28 (1) ◽  
pp. 3-17
Author(s):  
Christine De Goede ◽  
Abraham P Greeff
Keyword(s):  
Low Income ◽  
Transition To Parenthood ◽  
Specific Problem ◽  
Family Members ◽  
Major Theme ◽  
Structured Interviews ◽  
Theory Analysis ◽  
Family Routines ◽  
Temporal Complexity ◽  
Context Specific

The aim of this qualitative study was to explore what assists couples in sustaining family routines after the transition to parenthood. Participants were recruited from two day-care centres in Cape Town, South Africa. In-depth, semi-structured interviews were conducted with 10 couples, mostly from low-income households, who had gone through this transition between one and four years previously. Grounded theory analysis revealed one major theme, Factors that decrease task and temporal complexity, with seven subthemes: Support from the wider family network; Couple cooperation and tag-teaming; Planning and pre-empting future problems; Adhering to schedules; Facilitative characteristics and skills of individual family members; Parents’ sense of commitment and responsibility towards family members; and idiosyncratic accommodations. Results underscore the need for professionals to help parents gain support from relatives; strengthen partner teamwork; foster schedule consistency; improve skills such as planning; foster their caretaker self-concepts; and facilitate context-specific problem-solving.

Mentalizing Imagery Therapy mobile application for family dementia caregivers: feasibility and effects on mood and caregiving

2018 ◽  
Author(s):  
Abu Sikder ◽  
Francis Yang ◽  
Rhiana Schafer ◽  
Glenna A. Dowling ◽  
Lara Traeger ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Mobile Application ◽  
Self Regulation ◽  
Pilot Trial ◽  
Depression Symptom ◽  
Structured Interviews ◽  
Physical Strain ◽  
Dementia Caregivers ◽  
Loved One ◽  
People With Dementia

Objectives: Due to psychological and physical strain, family caregivers of patients with Alzheimer’s disease and related dementias are at high risk for depression and stress related disorders. We investigated the feasibility of a mobile application (App) intervention delivering Mentalizing Imagery Therapy (MIT), which incorporates guided imagery and mindfulness, to facilitate self-regulation and increase perspective on the mental life of self and others. Method: A 4-week pilot trial of an MIT App for family caregivers of people with dementia was conducted to assess feasibility of use, mood and depression symptom benefit, and relationship changes. Semi-structured interviews were conducted at the study’s conclusion to characterize participants’ perceived benefits. Results: 80% of 21 consented participants downloaded the App, utilized it at least once, and were further analyzed. Of these participants, average usage of audio recordings was 14 ± 10 (SD) days out of 28 possible, and 29 ± 28 individual sessions. Acute improvement in mood from before to after completion of exercises was uniformly observed (p &lt; .001), and after four weeks there was a significant increase in positive affect and a reduction in negative affect. Participants with severe levels of depression (n=3) at baseline exhibited an improvement in symptoms at 4 weeks averaging 30% (p &lt; .05). Semi-structured interviews revealed an increase in the ability to remain “centered" despite caregiving challenges, take the perspective of the loved one, and positively reframe the caregiver experience.Conclusion: App delivery of MIT is feasible for family dementia caregivers. Results showed moderate to high usage of the app for a majority of the users, and promising improvements in mood and depression. These data provide justification for larger, controlled trials.

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