Need For Emotional Support Research Articles

QOL-18DO CAREGIVER (CG) NEEDS CHANGE ACROSS THE DISEASE TRAJECTORY?

BACKGROUND: It is well documented that CGs of neuro oncology patients have complex needs that vary across the disease trajectory. It has also been suggested that needs vary by individual and further work to better understand the expectations of support, as well as the timing and nature of support is needed. METHODS: In September 2013 the UCSF Neuro Oncology Division launched a program to specifically provide care to CGs. We focused initial efforts on the needs of CGs of patients with newly diagnosed glioblastoma (NDGBM) who were offered services over the first 4 months of the illness. For high risk (HR) patients characterized either at the time of progression or transition to hospice, CGs were offered services as much as needed after referral. The needs assessment spanned several domains. We report on the first 18 months of providing care to these 2 groups of CGs. RESULTS: Of 65 CGs of NDGBM patients, 21% identified no needs, and of those that did, 52% had more than 1 need. 82% of 144 CGs of HR patients had multiple needs. Both groups had highest needs around emotional support and advocacy, with the HR CGs expressing significant higher need for emotional support at 80%. HR CGs had higher percentage of needs when compared to the NDGBM CGs around obtaining caregiver resources ( 42% vs 28%), family relations (30% vs 11 %), health care navigation and obtaining psychological services (26% vs 6 %), and health information (21% vs 8%). CONCLUSIONS: CGs express the need for increasingly complex support as the illness progresses with a differential demand compared to the time of initial diagnosis. This suggests that developing specific modules of care for high demand needs throughout the trajectory of the illness will improve the QOL of CGs of neuro-oncology patients.

Anticipating the needs of the neuro-oncology caregiver.

228 Background: It is well documented that CGs of neuro-oncology patients have complex needs that vary across the disease trajectory. It has also been suggested that needs vary by individual and further work to better understand the expectations of support, as well as the timing and nature of support is needed. Methods: In September 2013, the UCSF Neuro-Oncology Division launched a program to specifically provide care to CGs. We focused initial efforts on the needs of CGs of patients with newly diagnosed glioblastoma (NDGBM) who were offered services over the first 4 months of the illness. For high risk (HR) patients characterized either at the time of progression or transition to hospice, CGs were offered services as much as needed after referral. The needs assessment spanned several domains. We report on the first 18 months of providing care to these two groups of CGs. Results: Of 65 CGs of NDGBM patients, 21% identified no needs, and of those that did, 52% had more than one need. 82% of 144 CGs of HR patients had multiple needs. Both groups had highest needs around emotional support and advocacy, with the HR CGs expressing significant higher need for emotional support at 80%. HR CGs had higher percentage of needs when compared to the NDGBM CGs around obtaining caregiver resources ( 42% vs. 28%), family relations (30% vs. 11 %), health care navigation and obtaining psychological services (26% vs. 6 %), and health information (21% vs. 8%). Conclusions: CGs express the need for increasingly complex support as the illness progresses with a differential demand compared to the time of initial diagnosis. This suggests that developing specific modules of care for high demand needs throughout the trajectory of the illness will improve the QOL of CGs of neuro-oncology patients.

Providing meaningful care for families experiencing stillbirth: a meta-synthesis of qualitative evidence.

The objective of this study was to explore the meaningfulness of non-pharmacological care experienced by families throughout the experience of stillbirth from diagnosis onwards. A comprehensive systematic review was conducted. Multiple sources were searched for relevant studies including gray literature. Studies were included if they reported the experiences of families with the care they received throughout the experience of stillbirth, from diagnosis onwards. Studies were assessed for methodological quality prior to inclusion. Qualitative findings were extracted from included studies and pooled using a meta-aggregative approach. This paper reports the results of one meta-synthesis from the systematic review. Ten qualitative studies of moderate to high quality informed this meta-synthesis. The meta-aggregative synthesis included 69 findings that informed the development of 10 categories and one final, synthesized finding. Emerging themes that underpinned the meaningfulness of care provided to parents experiencing stillbirth included: information provision, the need for emotional support and appropriate maternity ward environments and systems. The results of this meta-synthesis revealed the elements of care that were experienced as meaningful from the perspective of parents who had experienced stillbirth. Exploration of these elements has provided important detail to underpin a growing understanding of how parents experience care and what may help or hinder parents' experience of distress, anxiety and grief throughout the experience of stillbirth.

Changes in general practitioners’ sensitivity to patients’ distress in low back pain consultations

ObjectiveWe aim to study GPs’ sensitivity to patients’ distress and communication on psychosocial factors prior to and after the introduction of the clinical guideline for low back pain. MethodsConsultations from previous studies on doctor–patient communication in the Netherlands were available for secondary analyses. We selected consultations in which patients presented low back pain complaints (N=168; 25 from 1989, 6 from 1995, 116 from 2001, 21 from 2008) and analyzed these consultations using the Roter Interaction Analysis System (RIAS) and the Verona Coding Definitions of Emotional Sequences (VR-CoDES). ResultsGPs more often acknowledged psychosocial factors during consultations after implementation of the guideline for non-specific low back pain. Moreover, patients more often voiced their worries, while GPs put more emphasis on providing biomedical information and counseling during these consultations. ConclusionsGPs tend to emphasize biomedical factors rather than supporting their patients emotionally. Patients are likely to voice their worries implicitly, indicating they have a need for emotional support from their GPs. Practice implicationsGPs now face the challenge of not only recognizing psychosocial aspects during consultations with low back pain, but also actively eliciting concerns regarding these psychosocial aspects.

Management of diabetic foot disease and amputation in the Irish health system: a qualitative study of patients' attitudes and experiences with health services.

BackgroundDiabetes is an increasingly prevalent chronic illness that places a huge burden on the individual, the health system and society. Patients with active foot disease and lower limb amputations due to diabetes have a significant amount of interaction with the health care services. The purpose of this study was to explore the attitudes and experiences of foot care services in Ireland among people with diabetes and active foot disease or lower limb amputations.MethodsA purposive sample of individuals who had either active foot disease or a lower limb amputation as a result of diabetes were recruited from the Prosthetic, Orthotic and Limb Absence Rehabilitation (POLAR) Unit of an Irish hospital. One-to-one interviews were conducted in the POLAR unit using a semi-structured topic guide. Thematic analysis was used to identify, analyse and describe patterns within the data.ResultsTen males participated in the study. Most participants expressed a need for emotional support alongside the medical management of their condition. There were substantial differences between participants with regard to the level of education and information they appeared to have received regarding their illness. There were also variations in levels of service received. Transport and medication costs were considered barriers. Having a medical card, which entitles the holder to free medical care, eased the burden of the patient’s illness. A number of participants attributed some of the problems they faced with services to the health care system as a whole rather than health care professionals.ConclusionResults suggest that rehabilitation services should place a strong focus on psychological as well as physical adjustment to active foot disease or lower limb amputations. The delivery of services needs to be standardised to ensure equal access to medical care and supplies among people with or at risk of lower extremity amputations. The wider social circumstances of patients should be taken into consideration by health care professionals to provide effective support while patients adjust to this potentially life changing complication. The patient’s perspective should also be used to inform health service managers and health professionals on ways to improve services.

Multisource evaluation of multidisciplinary low-vision services for children and young people

Professional bodies and healthcare commissioners recommend the provision of care for children and young people with sight impairment (SI) as a topic for quality improvement and service evaluation, but no unified evaluation tool is available. We aimed to develop and implement a tool to evaluate the quality of children’s low-vision services (LVS). We identified and reviewed available standards for LVS from government documents and surveys carried out by patient support organisations, developed a clinic proforma and six survey tools for families and professionals, and used these tools to carry out a first service evaluation of multidisciplinary LVS provided by children’s eye clinics, social services, and education teams for SI students in Bedfordshire and London, United Kingdom. The first service evaluation round showed that services provided are of high standard, but also identified specific areas for improvement such as provision of information in preferred format, formation of parent and young people support groups, and an unmet need for emotional support.

Le rôle modérateur des besoins socio-émotionnels dans la relation entre le soutien perçu et l’engagement organisationnel

This paper examines the role of employees’ socioemotional needs in the relationship of perceived organizational support and perceived supervisor support to affective organizational commitment. Based on a sample of 209 employees affiliated with a variety of organizations, analyses indicate that perceived organizational support and perceived supervisor support are more strongly related to organizational commitment when the need for emotional support is high but is less strongly related to organizational commitment when the need for affiliation is high. In contrast, the need for esteem and the need for approval have no moderating effects. These results offer new research perspectives on the role of individual characteristics in regard to the impact of perceived support on employees’ attitudes toward the organization.

Care of the caregiver: Improving caregiver outcomes across the disease trajectory.

82 Background: Caregivers are essential members of the health team, often assuming diverse primary care roles for the cancer patient. Caregiver needs vary across the trajectory of illness and range from informational needs to emotional support to assistance with accessing resources. The needs of caregivers of brain tumor patients are complex not only because of the life threatening nature of the illness but also because of the wide range of neurological and cognitive deficits patients experience, a known risk factor for added stress to the caregiver. To address these challenges and improve caregiver outcomes, the Neuro Oncology Division at UCSF developed a program to provide an additional layer of care that includes information and support to caregivers of brain tumor patients across the trajectory of illness, from diagnosis to death. Methods: The program consists of a medical director and a dedicated nurse practitioner, social worker and coordinator, all focused on the caregiver of the brain tumor patient. The goals of the program are to provide information needed to assist with disease and symptom management, effective communication with the health care team, maximization of use of available resources, and to provide emotional support. Three groups of caregivers were targeted: caregivers of all new patients with a focus on newly diagnosed glioblastoma and caregivers of patients deemed at “high risk,” either identified by the provider, or because of the phase in the illness trajectory. Results: Since June 2013, 13 caregivers reported no needs for the first 4 months from diagnosis. 13 caregivers received care, with over half reporting concerns regarding financial issues and disability as well as need for emotional support around adjusting to the diagnosis, role changes, and care demands. In addition, varying levels of care have been provided to 70 caregivers of patients identified at “high risk” for distress due to disease progression or when transitioning to hospice. Conclusions: This program provides care to caregivers of brain tumor patients at specific time points to improve caregiver outcomes. Challenges include tailoring the information at the right time as well as measuring outcomes with minimal extra burden to the caregiver.

SP-03 * CARE OF THE CAREGIVER: ENHANCING NEURO-ONCOLOGY PATIENT CARE

UCSF Neuro Oncology has developed a formalized program to identify and meet the needs of caregivers of brain tumor patients. To date the program has targeted care to three groups of caregivers, those of new patients seen at clinic, caregivers of patients with newly diagnosed glioblastoma, and caregivers of patients deemed to be at high risk, either by an interaction with the healthcare provider, or because of the phase in the illness trajectory. Caregiver assistance has been offered at specific points in the first 4 months of illness to 30 caregivers of patients with newly diagnosed glioblastoma, 13 of which received care. 13 caregivers reported no needs over the first 4 months of illness. Although various needs were identified, over half had concerns with financial issues and disability as well as need for emotional support around adjusting to the diagnosis, role changes, and care demands. In addition we have offered varying levels of care to 70 caregivers of patients identified at high risk for distress. Similar themes were identified in this group, with over 31 caregivers receiving emotional support, 22 needing help with financial and disability concerns and 15 needing various kinds of information about the disease, treatment, and resources available. Challenges encountered include providing the right information at the right time, where to house caregiver documentation, measuring outcomes with minimal extra burden to the caregiver, and blurred lines of service between care of the patient and of the caregiver. Future directions include offering psycho-educational support groups for caregivers and a program designed to reach caregivers at time of surgery to provide information and basic caregiver skills in efforts to boost confidence and improve efficacy as well as bridge the gap of interactions with the health care team between time of discharge and first visit to the clinic.

RESILIENCE AND RECOVERY IN AMERICAN SĀMOA: A CASE STUDY OF THE 2009 SOUTH PACIFIC TSUNAMI

Case study methodology was used to explore the culturally situated response and recovery efforts following a tsunami in American Sāmoa. Data indicated that cultural mechanisms were effective in meeting physical needs but insufficient to manage the emotional trauma caused by such a large‐scale event. Samoan cultural norms strongly discourage uncontrolled emotional expression outside of ritualized grieving events. Disruptions in social networks and activities, combined with a lack of available emotional support, resulted in significant psychological distress for many survivors. Sixteen months after the tsunami residents continued to exhibit numerous symptoms of posttraumatic stress. In response to this need for emotional support, some groups within American Sāmoa are setting an example of how their culture can adapt by forging new, culturally grounded methods for addressing emotional needs that arose in the wake of the tsunami. Findings are analyzed through the lens of the social support deterioration deterrence model and activity settings theory.

Inuit parent perspectives on sexual health communication with adolescent children in Nunavut: “It's kinda hard for me to try to find the words”

BackgroundFor Inuit, the family unit has always played a central role in life and in survival. Social changes in Inuit communities have resulted in significant transformations to economic, political and cultural aspects of Inuit society. Where the family unit was once the setting for dialogue on family relations and sexuality, this has largely been replaced by teachings from the medical community and/or the school system.ObjectiveThe purpose of this study was to explore Inuit parent perspectives on sharing knowledge with teenage children about sexual health and relationships.MethodA qualitative Indigenous knowledge approach was used for this study with a focus on Inuit ways of knowing as described in the Piliriqattigiinniq Community Health Research Partnership Model. Interviews were conducted with 20 individual parents in 3 Nunavut communities in 2011. Parents were asked about whether and how they talk to their children about sexual health and relationships. An analytical approach building on the concept of Iqqaumaqatigiiniq (“all knowing coming into one”), which is similar to “immersion and crystallization,” was used to identify story elements, groupings or themes in the data. The stories shared by parents are honoured, keeping their words intact as often as possible in the presentation of results.ResultsParents shared stories of themselves, family members and observations of the community. Fifteen of 17 mothers in the study reported having experienced sexual abuse as children or adolescents. Parents identified the challenges that they have and continue to experience as a result of forced settlement, family displacement and the transition of Inuit society. They expressed a desire to teach their children about sexual health and relationships and identified the need for emotional support to do this in the wake of the trauma they have experienced. Parents highly valued elders and the knowledge they have about family relationships and childrearing.ConclusionThere are powerful, unresolved healing issues in Inuit communities. The traumatic experiences of the settlement and residential school era continue to have an impact on present-day family relationships. To support parent–child dialogue on sexual health and relationships, parents identified a need to repair relationships between youth and elders, and to provide culturally sensitive support to parents to heal from trauma.

What is coaching supervision and is it important?

In this study 33 executive coaches from Australia/New Zealand, and 29 purchasing clients, were interviewed about the functions of coaching supervision. Though coaches cited supervision as the intervention they would be most likely to deploy if they felt the need for emotional support, few coaches said they often felt the need for such support. The predominant function of coaching supervision for coaches was developmental. For purchasing clients, on the other hand, the primary purpose of supervision was quality control, though only 21% of purchasing clients insist on supervision as part of a quality assurance process. In this context, the notion that coaching supervision should be mandatory, regular and undertaken individually with a qualified coach supervisor is discussed.

Psycho social needs of the care givers of the children with disabilities - a qualitative study in a rural community of Karnataka.

Care givers play a central role in the lives of the children with disabilities. Their well being is essentially linked to that of their children. The socio cultural practices among the people in rural and urban community vary. Using a qualitative research method this was an attempt was to find the psychosocial needs of the caregivers while caring their children with disabilities in a rural community. The need for the study was to develop a psycho social intervention programme for the care givers of the children with disabilities to improve their quality of life based on their needs. Focus group discussions and In-depth interviews were conducted with 25 mothers and 2 grand mothers of the children with disabilities. The time duration of the study was two months. The findings of this study are: Need of emotional support, to reduce the stigma and ostracism towards disable individuals, need for financial support, reducing family burden and need for improving perceived social support to the care givers.

Family members’ perceptions of end-of-life care across diverse locations of care

BackgroundThe goal of the study was to assess perceived level of satisfaction with end-of-life care, focusing on the last 48 hours of life.MethodsA previously validated instrument was used in a telephone survey with bereaved family members (n=90) of patients who died within an organization in British Columbia.ResultsBereaved family members had many unmet needs for information about the patient’s changing condition, the process of dying, how symptoms would be managed and what to do at the time of death. In addition, many bereaved relatives felt that the patient or resident had an unmet need for emotional support and that their own emotional needs were not addressed adequately. The last place of care had the most significant effect on all of these variables, with acute care and residential care having the most unmet needs. Hospice had the fewest unmet needs, followed by the palliative and the intensive care units.ConclusionsWe discuss these findings in relation to overall satisfaction with care, focus on individual, ethno-cultural and diversity issues, information and decision-making, symptom management and attending to the family. We conclude by offering possible practices address the end-of-life needs of patients and family members.

Perceived unmet needs of informal caregivers of people with dementia in Singapore

This study aimed to explore the experiences and challenges of informal caregivers in Singapore with the intent of identifying the multi-dimensional unmet needs from their perspective and generating caregivers' needs checklist based on the findings. Informal caregivers were relatives of people with dementia and were responsible for organizing care and providing regular physical and/or financial support. Using a qualitative research design, informal caregivers' experiences were explored. A total of ten focus group discussions and 12 semi-structured interviews were conducted with adult caregivers. Caregivers' perceived unmet needs were identified using thematic analysis. Findings from the qualitative study were combined with inputs from professionals to create a checklist of caregivers' needs for dementia. The average age of the participants was 52.9 years; the majority of the participants were of Chinese ethnicity (50%), followed by Indian (23%), Malay (22%), and other (3%) ethnic groups. Informal caregivers perceived four categories of unmet needs: (i) emotional and social support, (ii) information, (iii) financial support, and (iv) accessible and appropriate facilities. Caregivers strongly expressed the need for emotional support to overcome the psychological and physical burden of care. Challenges with obtaining adequate information, access to services, and financial barriers were discussed. Based on these findings and expert panel discussions, a checklist of 26 items representing their unmet needs was designed. Informal caregivers face several challenges while caring for their relative with dementia and hence there is a clear demand to address their unmet needs for information, services, respite, and emotional and financial support.

Sources of “relational homes”: a qualitative study of cancer survivors’ perceptions of emotional support

The aim of this article is to shed light on the different ways in which a group of Danish cancer survivors fulfil their need of emotional support. The study comprised participant observation at a Danish cancer rehabilitation centre, individual semi-structured interviews and focus group interviews with course participants. The analytical process combined the inductive approach of interpretative phenomenological analysis with a deductive theoretical strategy. Key concepts from Robert D. Stolorow's existential-phenomenological trauma theory were used as interpretative framework. Findings suggest that cancer survivors’ perception of emotional support is captured by the theoretical concept a “relational home,” understood here as a supportive and caring environment. A relational home may include different dimensions in various situations and contexts, including an existential and metaphysical dimension in which God/a higher power may provide emotional support similar to that obtained in human relationships.

APOIO SOCIAL, ACONTECIMENTOS STRESSANTES, ADAPTABILIDADE E COESÃO EM FAMÍLIAS EM RISCO PSICOSSOCIAL

Over the last decades the infant protection systems shifted from an assistance perspective to a perspective focused on family preservation. Since the effectiveness of interventions depends on its adjustment to the needs of these families, it is crucial to analyze the life trajectories and understand the family dynamics. In this study we analyzed family cohesion and adaptability, stressful life events, and social support in families with minors at psychosocial risk. We interviewed 51 participants (64,7% females), aged between 16 and 57 years-old, living in Faro. We used the Arizona Social Support Interview Schedule, the Scale of Social Support for Stressful Life Situations, the Family Adaptation and Cohesion Scales, the Inventory of Stressful and Risk Situations, and a socio-demographic questionnaire. Families had a high unemployment rate and an accentuated educational, financial and occupational precariousness. Participants experienced a significant number of stressful life events, mainly related to psychological, marital and financial problems, with high emotional impact. Regarding family functioning, cohesion levels were higher than adaptability levels. Participants reported a higher need for emotional support than informative or material support. Participants received little support from professionals and their main source of social support were Familias em risco psicossocial 305 family members and friends. We discuss the needs for support and intervention to be taken into account by professionals who work with these families.

Mental health recovery on care farms and day centres: a qualitative comparative study of users’ perspectives

Purpose: Mental health services increasingly incorporate the vision of recovery. This qualitative study analysed and compared experiences of recovery on prevocational services, in order to assess if users make progress towards recovery, relative to a staged recovery model. Method: Data were collected through semi-structured interviews with participants on care farms (n = 14), work (n = 7) and creative projects (n = 5). Results: The transition from past to current lives was described as a progressive, non-linear process, with different stages guided by different goals. Participants on creative projects lacked clear goals, presented less interest in peers and high need for emotional support. Participants on work projects aimed for occupational rehabilitation, but struggled with the patient culture of the peer community. Participants on care farms aimed for daytime occupations and closer contact with society. They experienced care farms as open, real-life work settings where they could exercise responsibility and connect with people. Conclusions: Participants progressed towards recovery, as care farms, work- and creative projects empowered them to leave behind inactive, isolated or disorganized living. In day centres, users focused on self-reflection and personal development (creative projects) or on occupational performance (work projects), whereas on care farms, users fulfilled worker roles in a real-life, open community environment.Implications for RehabilitationOrganized as open communities in real-life settings, care farms facilitate the reflection on personal and social responsibility, and therefore have the potential to help users internalize worker identities and improve their motivation to progress towards recovery.Supervisors on care farms are regarded by users as close contacts within the social networks they develop on the service, a position that allows supervisors to actively engage and promote users’ progress towards recovery.Elements of the farm environment (such as the “normal life”, presence of family members and visitors, and nature) can serve as anchors for supporting the progress towards recovery.

Social Networking in Online Support Groups for Health: How Online Social Networking Benefits Patients

An increasing number of online support groups (OSGs) have embraced the features of social networking. So far, little is known about how patients use and benefit from these features. By implementing the uses-and-gratifications framework, the author conducted an online survey with current users of OSGs to examine associations among motivation, use of specific features of OSG, and support outcomes. Findings suggest that OSG users make selective use of varied features depending on their needs, and that perceptions of receiving emotional and informational support are associated more with the use of some features than others. For example, those with strong motivation for social interaction use diverse features of OSG and make one-to-one connections with other users by friending. In contrast, those with strong motivation for information seeking limit their use primarily to discussion boards. Results also show that online social networking features, such as friending and sharing of personal stories on blogs, are helpful in satisfying the need for emotional support. The present study sheds light on online social networking features in the context of health-related OSGs and provides practical lessons on how to improve the capacity of OSGs to serve the needs of their users.

Parents’ experiences of their child’s first anaesthetic in day surgery

Parents play an important part in their child's anaesthesia. When a child has to receive anaesthesia, it is of great importance that parents are there by his/her side as children depend on them for support. Many parents worry and experience fear before their child's anaesthesia and studies show that there is a correlation between a worried parent and a worried child. The purpose of this study was to illustrate the meaning of being a parent at one's child's first anaesthesia in day surgery. Six parents were interviewed and data were analysed using a descriptive qualitative approach inspired by phenomenology. The phenomenon, 'a child's first anaesthesia in day surgery as experienced by parents' is based on the following components: ambivalence between worry and relief, a feeling of losing control, needing to be prepared, being able to be present and a need of emotional support. Specific individually-adapted information with a compulsory preoperative visit, presence and participation from, if possible, both parents at their child's anaesthesia but also designated staff from the anaesthetic team to focus solely on supporting the parents at their child's anaesthesia induction can improve the conditions for security.