Explore Family Members Research Articles

Family members’ involvement in the care of critically ill patients in two intensive care units in an acute hospital in Bahrain: The experiences and perspectives of family members’ and nurses’ - A qualitative study

Objective: Family can play a vital role in promoting the overall well-being of the critically ill patient. Despite this positive attribute, some nurses, for various reasons are hesitant to include family in patient care. The study explored family members and nurses’ perspectives and experiences of family involvement in caring for patients in intensive care units. The objectives were to describe both nurses and family members’ perspectives and experiences of family involvement in care. Methods: A descriptive exploratory qualitative study. Focus-group interviews were conducted using a purposeful sample of six family members of critically ill patients and six nurses from two intensive care units of a hospital in Bahrain. Results: A central finding was that overall critical care nurses were reluctant to involve family in care, despite the fact that generally family members were willing to participate in care. Themes that were common to both participant groups were that caring practices and active communication were central to quality patient care. Both groups agreed that kinship roles and relationships were pivotal to caring practices and enabled a sense of security and reassurance for family and patients. Despite the fact that nurses were aware that family knowledge of the patient made it possible for them to personalize patient care, they were reluctant to have open communication with family members and to include them in care. Instead they favored policy development to guide family involvement. Conclusions: Family members expressed the need to be part of caring practices. While the nurses acknowledged that family involvement in patient care benefited the patient they wanted policy guidelines to guide this participation in care. The findings suggest that role clarification of family members and clarification on the responsibilities of nurses are needed if family members are to be involved so that patient care adheres to international standards while maintaining cultural sensitivity to Islamic family values.

Family members’ needs and experiences of driving disruption due to health conditions or ageing

Purpose: Family members often assume the caregiving role and provide practical assistance and emotional support when an individual is experiencing driving disruption due to health conditions or ageing. The purpose of this study was to understand the experiences, viewpoints and needs of family members with regards to an individual undergoing driving disruption across various population groups. Method: A scoping review was conducted through searching across six databases and hand searching articles published from 1985 to 2013. Findings from the articles specific to the aims of the review were extracted and summarised into common topics. Results: Twenty-seven articles were included; dementia or cognitive impairment (16 articles), older adults (8 articles) and brain injury (3 articles). The most common topic raised was related to decisions and consequences for the individual. Other concerns were related to family members’ occupational role changes, emotional and communication issues and support needs of family members and their recommendations for services. Conclusions: This review revealed the impact of driving disruption on family members but research is limited, especially in the area of brain injury. The majority of articles did not set out to explore family members’ experiences and needs and this highlights an area that requires critical attention.Implications for RehabilitationHealth professionals should be aware of the potential impact of driving disruption on family members.Family members frequently raise concerns regarding the decisions and consequences for their relative, but also bring up personal concerns such as changes to their own occupational roles and the communication and emotional issues they face during driving disruption.Unique challenges arise between family members of individuals of different health conditions, thus highlighting the importance of family caregiving research in various population groups.

Knowledge of Dementia: Do family members understand dementia as a terminal condition?

Current research identifies advanced dementia to be the terminal phase of this progressive and incurable condition. However, there has been relatively little investigation into how family members of people with advanced dementia understand their relative's condition. In this article, we report on semi-structured interviews with 10 family members of people with advanced dementia, in a residential aged care facility. Using a qualitative, descriptive design, we explored family members' understandings of dementia, whether they were aware that it was a terminal condition, and the ways they developed their understandings. Findings revealed that the majority of family members could not recognize the terminal nature of dementia. Relying on predominantly lay understandings, they had little access to formal information and most failed to conceptualize a connection between dementia and death. Moreover, family members engaged in limited dialogue with aged care staff about such issues, despite their relatives being in an advanced stage of the disease. Findings from our study suggest that how family members understand their relative's condition requires greater attention. The development of staff/family partnerships that promote shared communication about dementia and dying may enhance family members' understandings of the dementia trajectory and the types of decisions they may be faced with during the more advanced stages of the disease.

The Importance of Situational Awareness

Family-centered rounds (FCR) has become a leading model for pediatric inpatient rounding. During FCR, faculty must balance trainees' educational needs with patient care priorities. Investigators have examined trainees' views on effective teaching during FCR, but none have evaluated what family members and nurses consider to be effective teaching behaviors of attending physicians. The authors sought to explore family members' and nurses' perspectives on effective teaching behaviors during FCR. The authors conducted (2012-2013) a qualitative study of families and nurses at an academic children's hospital where FCR is the standard model for inpatient rounds. Nurses and families familiar with FCR participated in separate focus groups. The authors reviewed focus group transcripts using techniques of qualitative content analysis; they generated codes and developed categories, supported by illustrative quotations. Fifteen nurses and 13 family members participated in the focus groups. The unifying theme was that situational awareness on behalf of the attending physician is essential for FCR to be educational for all participants. The authors identified four categories of awareness-(1) cognitive factors, (2) logistics and time management, (3) physical environment, (4) emotional state-and developed a set of effective teaching strategies based on participants' comments. The findings of this study support previous work identifying effective FCR teaching strategies, but this study is the first to include the perspectives of families and nurses. The inclusion of these participants provides a framework for faculty development and training to improve the educational value of FCR.

A Mobile-Assisted Working Model for Supporting Daily Family Life

Despite rapid technological development, very few new technology-assisted tools have been developed specifically for use in family services. This article describes a new, mobile-assisted working model designed to enhance the quality of daily family life. The model has its origins in the existing research on daily family life and on the diary method, which has been widely used in data collection in family research. The model provides support for the daily life of client families in the intervals between meetings with family counselors via the use of text messages. The pilot study explored family members’ and family counselors’ experiences of using the model. Data on 26 parents and four children participating in the new mobile-based service were collected via feedback text messages and web questionnaires. The research findings are also based on interviews with family counselors ( n = 6). Although clients’ experiences of the model varied widely, the results show that, in general, it was regarded as effective in invoking reflection, keeping the goals of family counseling in mind and implementing family practices at home. On the basis of the experiences of the family counselors, the mobile-based working model offers a new, systematic, and structured tool for use in working with families and monitoring processes in families.

Family members’ experiences of keeping a diary during a sick relative's stay in the intensive care unit: A hermeneutic interview study

The aim of the study was to explore family members' experiences with keeping a diary during a sick relative's stay in the ICU. A qualitative method with a hermeneutic approach was used. Eleven participants, who recorded nine diaries in total, were interviewed. The collected data were analysed using a hermeneutic approach inspired by Gadamer. The analysis revealed a meta-theme: 'it [writing in the diary] felt like contact' which was created by a feeling of togetherness and the opportunity to communicate with the patient. Keeping a diary likely meets the needs of family members in several ways because it becomes a way to be present at the patient's bedsides, to provide caregiving, to maintain hope and to relay cogent information. However, concerns regarding negative aspects of diary keeping were also raised; for example, the diary created feelings of stress, guilt and failure and exposed intimate details. The diary symbolised the maintenance of relationships with the patients and was a substitute for the usual opportunities for communication. Furthermore, it was instrumental in meeting the needs of the majority of family members in several ways. Nevertheless, the diary did have negative effects for certain individuals, which highlights the importance of an individualised approach.

What is the best way to support patients undergoing radiation therapy?

What is the best way to support patients undergoing radiation therapy?

Family Members’ Experience With Hospice in Nursing Homes

Research has documented numerous benefits and challenges associated with receipt of hospice care in nursing homes; however, study of this partnership from the perspective of residents' family members has been limited. The purpose of this qualitative investigation was to explore family members' experience with hospice services received in the nursing home setting. Researchers conducted a secondary data analysis of 175 family member interviews using a thematic analytic approach. Findings highlighted the critical role of communication in supporting residents and their family members. Care coordination, support and oversight, and role confusion also impacted family members' experience of hospice care in the nursing home. Efforts directed at enhancing communication and more clearly articulating the roles of members of the health care team are indicated.

Emotional resistance building: how family members of loved ones undergoing chemotherapy treatment process their fear of emotional collapse.

To explore family members' experiences when their loved one is undergoing chemotherapy treatment as an outpatient for newly diagnosed colorectal cancer and to develop an explanatory theory of how they process their main concern. Most individuals with cancer are now treated as outpatients and cared for by family members. International research highlights the many side effects of chemotherapy, which in the absence of specific information and/or experience can be difficult for family members to deal with. Unmet needs can have an impact on the health of both patients and family members. Classic grounded theory methodology was used for this study. Using classic grounded theory methodology, family members (n=35) of patients undergoing chemotherapy treatment for cancer were interviewed (June 2010-July 2011). Data were analysed using the concurrent processes of constant comparative analysis, data collection, theoretical sampling and memo writing. The main concern that emerged for participants was fear of emotional collapse. This fear was dealt with through a process conceptualized as 'Emotional Resistance Building'. This is a basic social process with three phases: 'Figuring out', 'Getting on with it' and 'Uncertainty adjustment'. The phases are not linear, but interrelated as participants can be in any one or more of the phases at any one time. This theory has the potential to be used by healthcare professionals working in oncology to support family members of patients undergoing chemotherapy. New ways of supporting family members through this most difficult and challenging period are articulated within this theory.

Family members' experiences of the impact of the LCP in a palliative care unit and a geriatric ward in Sweden.

The Liverpool Care Pathway for the Dying Patient (LCP) was developed to transfer palliative care standards for the last hours or days of life, including family support, from hospice to other care settings. This study sought to explore family members' experiences of end-of-life care in a palliative care unit and in a general geriatric ward in Sweden before and after implementation of the LCP. Experiences were evaluated in relation to the goals of the LCP. Family members of patients deceased before and after implementation answered a questionnaire 3-6 months after the death. Comparisons between the samples were assessed by non-parametric tests. There were significant differences concerning dialogue about existential issues that arise and about emotions and practical issues faced in bereavement. Significant improvements after the implementation of the LCP were reported in experiences regarding physicians' ability to listen to family members' concerns. The results suggest that using a structure such as that provided by the LCP may improve communication between physicians and the families of dying patients.

Everyday living with diabetes described by family members of adult people with type 1 diabetes.

The aim of this study was to explore family members' experiences of everyday life in families with adult people living with type 1 diabetes. The grounded theory method was used to gather and analyse data from the interviews of nineteen family members. Six concepts describing the family members' views on everyday living with diabetes were generated on the basis of the data. Everyday life with diabetes is described as being intertwined with hypoglycemia. Becoming acquainted with diabetes takes place little by little. Being involved in the management and watching self-management from the sidelines are concepts describing family members' participation in the daily management of diabetes. The family members are also integrating diabetes into everyday life. Living on an emotional roller-coaster tells about the thoughts and feelings that family members experience. Family members of adult people with diabetes are involved in the management of the diabetes in many ways and experience many concerns. The family members' point of view is important to take into consideration when developing education for adults with diabetes.

Family members' of persons living with a serious mental illness: Experiences and efforts to cope with stigma

BackgroundStudies have indicated that family members of persons with mental illness often experience stigma in relation to their relatives' illness. Less is known about the type of experiences they face and how they cope with these experiences.AimsTo explore family members' experiences and efforts to cope with mental illness stigma in social encounters.MethodA qualitative immersion/crystallization analysis of focus group data was used to examine family members' experiences and responses to perceived stigma.ResultsFamily members reported experiencing rejection, blame and avoidance by others, engendering hurt, disappointment and shame. They employed flexible coping strategies depending on their personal resources, motivation and their relatives' willingness to disclose.ConclusionFindings suggest that families learn from their own experience the “art of selective disclosure”: what, when, how much and who to share information with. Coping strategies are developed based on the situation and family members' needs and personal resources which differ between families and over time.

Communication relating to family members' involvement and understandings about patients' medication management in hospital

Many patients with complex health-care needs are prescribed several medications on a daily basis. With admission to hospital, patients are often placed in a vulnerable position. Family members can therefore play an important role in supporting patients in decision making about managing medications and negotiating communication exchange with health professionals. From the perspective of family members, to explore family members' involvement with health professionals and patients about how patients' medications are managed in hospital. Using an ethnographic design, interviews were conducted with family members of patients admitted to hospital who had at least five medications prescribed in hospital. A purposive sampling approach was used for recruitment. A thematic framework process was used for analysis. Interviews took place in four surgical and four medical wards in each of two Australian hospitals. Forty interviews were conducted with family members in relation to their respective relative's medications. Family members tended to participate in passive, rather than active or shared decision-making activities. Those who demonstrated active or shared decision making were extensively involved in managing medications and in addressing problems relating to continuity of care. Communication with health professionals was generally insufficient, despite family members' keenness to speak with them. Improved communication is needed between family members, health professionals and patients in hospitals. Greater attention should be played by health professionals in initiating communication proactively. Family members possessed valuable, unique information about patients' medications that can be utilized to facilitate patient safety.

The perspectives of bereaved family members on their experiences of support in palliative care

To explore family members' supportive interactions in palliative care and the emotional experiences that they associate with these interactions. Qualitative individual interviews were performed with bereaved family members recruited from an urban palliative care service in Sweden. The interviews were analysed using inductive qualitative content analysis. Five categories of supportive interactions with staff members were linked with emotional consequences: informational support, supportive encounters, professional focus of staff, a supportive environment, and bereavement support. Having a dialogue with family members nurtured certainty and security, supportive encounters gave a warm and comforting feeling, and bereavement support contributed to feelings of strength. Environmental factors contributed to dignity. Supportive interactions with staff and within a home-like environment help to build resilience if tailored to the family member's own needs.

Supporting a Relative’s Move into Long-term Care: Starting Point Shapes Family Members’ Experiences

This grounded-theory study explored family members' experiences supporting a relative's move into a long-term care (LTC) home. Each stage in the transition process, and the role of starting point in shaping the experience, were examined. Twenty family members who moved a relative into an LTC home were interviewed within six weeks of the move. The findings revealed that the starting point had a profound effect on family members' experiences accepting the need for, and timing of, their relative's move into LTC (pre-move), and on believing that the selected LTC home was a positive environment for their relative (post-move). LTC home policies and processes were also important. However, when pre-move acceptance was compromised by circumstances attributed to the starting point, these policies and processes were not as effective in fostering post-move acceptance. Conditions that support positive transitions before, during, and after the move from each starting point are discussed.

The Living–Dying Interval in Nursing Home-Based End-of-Life Care: Family Caregivers' Experiences

Guided by concepts from the living–dying interval (Pattison, 1977) this study sought to explore family members' experiences with a dying nursing home resident. In-depth interviews were conducted with 31 caregivers of residents who had died. Interviews were audiotaped and transcribed. Themes that illuminated families' experiences on the living–dying interval were: an acute medical crisis (trigger events, accumulation of stressors, level of care crisis); the living–dying phase (advance care planning, hospitalization, end-stage decisions); and the terminal phase (beginning of the end, awareness of dying). The results illustrate critical periods for social work intervention with families of dying nursing home residents.

“Helping Them Understand”

This qualitative study explored family members' perceptions of nurses' caring behaviors. Semistructured interviews were conducted with 10 family members of moderately to severely injured trauma patients cared for at a level II trauma center. The dominant behavior identified as being caring was explaining what was going on and interpreting medical jargon. Appearing hurried and abrupt was noted as behavior that was not caring. In a highly stressful situation such as trauma, the interpersonal relationship the nurse develops with the family influences the perception of the care received.

A theory to guide families and carers of people who are at risk of suicide

The aim of this study was to explore family members' and ex-patients' perceptions of caring for people who had previously attempted suicide. Suicide is a major public health problem in Taiwan. Official figures demonstrate that suicide was one of the top 10 causes of death in the last eight years, with 18.8 per 100,000 people taking their own lives in 2005. The Taiwanese Government has set targets to reduce this rate. All members of the population play a role in the prevention of suicide, including families and carers of those at risk. Evidence is sparse on the role that families take in caring for members who have been discharged from hospital following a suicide attempt. Grounded theory using one-to-one tape-recorded interviews were conducted with patients who had just been discharged from hospitals following a suicide attempt (n = 15) and family members (n = 15). Data were analysed using open, axial and selective coding. The core category that emerged was 'Impending burnout', depicting family members' experience of caring for people who had attempted suicide. Other key categories linked to and embraced within this core category were: on guard day and night, maintaining activities of daily living and creating a nurturing environment. Families and carers could use the emergent theory as a guide to caring for people at risk of suicide. Psychiatric nurses could use the theory as a framework to educate family members on enhancing the quality of care provided to this group of people. The theory could go some way towards reducing suicidal attempts and decreasing re-hospitalisation rates. The finding indicated that family members experienced difficulties when caring for those who had previously attempted suicide. Consequently, nurses have a pivotal role in educating families and carers on preventive strategies before suicidal patients are discharged from hospitals.

Family members’ experiences of the intensive care unit waiting room

This paper is a report of a study to explore family members' perspectives and experiences of waiting rooms in adult intensive care units. Waiting to visit family members who are hospitalized in intensive care units can be very stressful. Although flexible and or open visiting is practised in many hospitals, family members may spend a great deal of time in the waiting room. A qualitative design using semi-structured interviews was used and the data were collected in 2004. A convenience sample of six visitors was recruited from waiting rooms of three different adult intensive care units. Data collection and analysis were concurrent. Six categories emerged from the data that included structural and subjective aspects of waiting: 'close proximity' referred to the importance of a close physical distance to their family member; 'caring staff' captured the comfort family members felt when staff showed caring behaviours towards relative; 'need for a comfortable environment' represented the impact of the design of the waiting room on family members well-being; 'emotional support' referred to the waiting room as a place where comfort was found by sharing with others; 'rollercoaster of emotions' captured the range of emotions experienced by family members; 'information' referred to the importance of receiving information about their relative. Future research should focus on the impact of the interior design of waiting rooms on the comfort and welfare of family members and on identifying needs of family members across different cultures.

Men's Decision‐Making About Predictive BRCA1/2 Testing: The Role of Family

Men who have a family history of breast and/or ovarian cancer may be offered a predictive genetic test to determine whether or not they carry the family specific BRCA1/2 mutation. Male carriers may be at increased risk of breast and prostate cancers. Relatively little is known about at-risk men's decision-making about BRCA1/2 testing. This qualitative study explores the influences on male patients' genetic test decisions. Twenty-nine in-depth interviews were undertaken with both carrier and noncarrier men and immediate family members (17 male patients, 8 female partners, and 4 adult children). These explored family members' experiences of cancer and genetic testing, decision-making about testing, family support, communication of test results within the family, risk perception and risk management. Implicit influences on men's testing decisions such as familial obligations are examined. The extent to which other family members--partners and adult children--were involved in testing decisions is also described. It is demonstrated that mothers of potential mutation carriers not only perceive themselves as having a right to be involved in making this decision, but also were perceived by their male partners as having a legitimate role to play in decision-making. There was evidence that (adult) children were excluded from the decision-making, and some expressed resentment about this. The implications of these findings for the practice of genetic counseling are discussed.