Explore Family Members Research Articles

COVID-19 IDD: Findings from a global survey exploring family members’ and paid staff’s perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities (IDD) and their caregivers.

Background: A growing body of evidence attests to the disproportionate impact of COVID-19 on persons with intellectual and developmental disabilities (IDD) during the pandemic. This study asked caregivers about their perceptions of how COVID-19 impacted them and the people they support. Method: An online survey was conducted in 12 countries during August-September 2020 and sought information on demographics, support practices, information and training, experiences of COVID-19, social distancing, and wellbeing, as measured by the DASS12. This study reports on 3,754 family members, direct support professionals, and managers who participated in the survey. Results: Caregivers observed increases in depression/anxiety, stereotyped behaviours, aggression towards others and weight gain in the person(s) they supported. They also reported difficulties supporting the person(s) to access healthcare. Families reported reducing or ceasing employment and absorbed additional costs when supporting their family member. Direct support professionals experienced changes in staff shifts, staff absences, increased workload and hiring of casual staff. Caregivers’ wellbeing revealed high levels of stress, depression, and less so anxiety. The strongest predictor of wellbeing among families was observation of changes in mood in the person(s) they supported, while for direct support professionals, the strongest predictors of wellbeing were reorganisation of staff shifts and increases in new direct support staff. Discussion: Findings support the contention of this population experiencing a disproportionate burden during the COVID-19 pandemic, reflecting historical inequities in access to healthcare and other human rights violations which are now protected under the United Nations Convention on the Rights of Persons with Disabilities.

Family carers' experiences of dysphagia after a stroke: An exploratory study of spouses living in a large metropolitan city.

People with post-stroke dysphagia often require informal care from family to facilitate safe swallowing, modify food/drink or administer tube-feeds. Previous survey studies have found dysphagia may increase family caregiver burden. However, the experiences of family members in this population have not been fully explored. To explore family members' experiences of living with a spouse with post-stroke dysphagia. This exploratory qualitative study used one-to-one semi-structured interviews to explore family members' experiences. They were asked open questions about previous eating routines, dysphagia onset, their role and future hopes. Interviews were audio-recorded, transcribed and analysed thematically with an inductive approach to determine key features of family members' experiences. Five spouses aged 70-93 years participated. Their relatives' strokes happened 3 months to 3 years before the interview. Five themes were identified: 'I do all of it'; making sense of dysphagia; emotional responses; reflecting on relationships; and redefining lifestyle. It is important to consider family members' perspectives as they often provide vital care to loved-ones with dysphagia. In relation to eating and drinking, maintaining elements of previous routines seems important to families. Healthcare professionals should consider these when making recommendations for rehabilitation. Family members have differing perspectives of the comparative impact of dysphagia; patient and family priorities should be explored for healthcare professionals to provide better-targeted support. What is already known on the subject Informal caregivers, often spouses, play a vital role in supporting the health and well-being of older people with health conditions. The presence of post-stroke dysphagia may present increased challenges for the informal caregiver. There are limited studies qualitatively exploring the experiences of informal caregivers in this population. What this paper adds to existing knowledge Current health and social care provision for this population leaves informal caregivers feeling they have been left to manage dysphagia alone. Informal caregivers demonstrate a breadth of knowledge about their spouse's dysphagia, problem-solving effective solutions. Informal caregivers have a range of interpretations of the nature and cause of dysphagia; leading to miscommunication with health professionals and complex emotional responses. What are the potential or actual clinical implications of this work? Healthcare professionals might consider ways in which to support dysphagic patients' families later in their care pathway, through scheduling reviews or running dysphagia patient and family groups. Health and social care professionals and policymakers should learn from informal caregivers' expertise to promote better health and quality-of-life outcomes for the patient and caregiver. Equal, open conversations between health and social care professionals and patients/families on their understanding of dysphagia may help informal caregivers to better voice their concerns and support mutual understanding. This has implications for adherence to recommendations, psychological well-being and patient safety.

COVID-19 IDD: Findings from a global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities (IDD) and their caregivers.

Background: A growing body of evidence attests to the disproportionate impact of COVID-19 on persons with intellectual and developmental disabilities (IDD) during the pandemic. This study asked caregivers about their perceptions of how COVID-19 impacted them and the people they support. Method: An online survey was conducted in 12 countries during August-September 2020 and sought information on demographics, support practices, information and training, experiences of COVID-19, social distancing, and wellbeing, as measured by the DASS12. This study reports on 3,754 family members, direct support professionals, and managers who participated in the survey. Results: Caregivers observed increases in depression/anxiety, stereotyped behaviours, aggression towards others and weight gain in the person(s) they supported. They also reported difficulties supporting the person(s) to access healthcare. Families reported reducing or ceasing employment and absorbed additional costs when supporting their family member. Direct support professionals experienced changes in staff shifts, staff absences, increased workload and hiring of casual staff. Caregivers' wellbeing revealed high levels of stress, depression, and less so anxiety. The strongest predictor of wellbeing among families was observation of changes in mood in the person(s) they supported, while for direct support professionals, the strongest predictors of wellbeing were reorganisation of staff shifts and increases in new direct support staff. Discussion: Findings support the contention of this population experiencing a disproportionate burden during the COVID-19 pandemic, reflecting historical inequities in access to healthcare and other human rights violations which are now protected under the United Nations Convention on the Rights of Persons with Disabilities.

A Qualitative Study of Caregiving to Older Adults with Depression: “Not the Person I Used to Know”

This qualitative descriptive study aims to explore family members’ perceptions and experiences as a caregiver to older adults (>65 years) with depression. The findings revealed three key themes reflecting the experiences of caregivers, including “not the person I used to know,” “my life has changed,” and “stigma of depression.” Findings suggest caregiver education is needed to assist caregivers to understand depression, provide appropriate support and care, take care of their own health, maintain participation in valued activities, and minimize the impact of stigma. The study suggests future research to expand the inclusion criteria to depression and other comorbidities.

The family intensive care unit syndrome: A qualitative content analysis.

Hospitalization of patients in an intensive care unit (ICU) is associated with a series of psychological problems for their family members called family intensive care unit syndrome (FICUS). Nonetheless, family members of patients in ICU often receive little attention from health care providers. Exploring family members' experiences of their patients' hospitalization in ICU helps health care providers focus more clearly on their problems. This study aimed to explore FICUS-related experiences among the family members of patients in ICU. This was a qualitative content analysis study. This qualitative study was conducted in 2019. Participants were 14 family members of patients in ICU who were purposively selected from three hospitals in Tehran, Iran. Data were collected using semi-structured interviews and were analyzed using qualitative content analysis. Participants' experiences of FICUS fell into four categories, that is, threat to psychological well-being (with four subcategories), threat to physical health (with three subcategories), threat to social health (with three subcategories), and change in spiritual orientation (with two subcategories). The 12 subcategories of these categories were emotional disturbances, hopelessness, changes in sleep pattern, mood changes, physical symptoms, aggravation of the existing illnesses, negligence towards personal health, alteration in social interactions, alteration in the burden of responsibility, alternation in the life process, resort to spiritual beliefs, and spiritual conflict, respectively. FICUS symptoms are not limited to psychological problems, rather they include a wide range of psychological, physical, social, and spiritual problems, which can affect the different aspects of family members' lives. Along with care delivery to patients in ICU, health care providers should provide care and support to patients' family members. FICUS is a major threat to health among the family members of patients in ICU. Careful assessment of these family members helps identify family members who are at risk for FICUS and identify FICUS effects on their decisions and health status.

Supporting Those Who Love the Loathed: Trauma-Informed Support Groups for Family Members of Registered Sex Offenders

Social workers are typically empathic, but it can be challenging to offer compassionate care to those who harmed others and, by extension, to the people who love them. This article describes a trauma-informed support group intervention for family members of individuals required to register as sex offenders (RSOs). We begin with a brief overview of this unique population, review the empirical research exploring family members’ needs and the services available to them, and introduce the trauma-informed framework for our support group. We will then describe the group’s development and dynamics. Finally, we will highlight trauma-informed practice skills and tools for facilitating effective and empowering support services with this hidden and stigmatized population.

Influencias familiares en las prácticas de alimentación materna a niños preescolares de familias vulnerables de la Región Metropolitana de Chile

ObjectiveTo explore family members’ influences on mothers’ feeding practices of preschoolers in Chilean families residing in vulnerable neighborhoods from the Metropolitan Region of Santiago, Chile. DesignQualitative study. LocationNine child care centers in Región Metropolitana, Santiago, Chile. ParticipantsTwenty-four mothers and one father of preschool children. MethodPhoto-elicitation techniques were applied to 25 semi-structured interviews and their subsequent inductive thematic analysis of family influences. ResultsThe participants described that the family influences on their feeding practices depended on the family structure and the interpersonal closeness between relatives. Some influences directly affected child eating behavior, especially in relatives who live together, while others were mediated by the relationships generated between parents and other members of the family. Fathers, in two-parent families, and grandparents are the most influential relatives on the participants’ feeding practices. Generally, fathers participated and were in line with the mother's feeding practices of their children. Grandparents enriched their grandchildren's eating experiences by offering homemade preparations, expressing affection with food, including unhealthy options, and supporting parents to diversifying and structuring feeding practices. ConclusionsAccording to their interpersonal closeness or cohabitation, parental feeding practices and child eating behaviors were impacted by family members and their dynamics. The development of strategies to prevent and treat childhood obesity should consider a family approach in vulnerable families.

VidaTalk™ patient communication application “opened up” communication between nonvocal ICU patients and their family

ObjectivesTo explore family members’ perceptions of an electronic communication application, VidaTalk™, their communication experience, and emotional reactions to communication with mechanically ventilated patients in the intensive care units. Research methodology/designQualitative phase of a mixed-methods study nested within a randomised controlled trial. Family members in the intervention group received the VidaTalk™ app as a communication aid during their intensive care stay. Seven family members participated in 18 semi-structured email interviews after discharge between May and December 2018. Interviews were analysed using qualitative content analysis. SettingFamilies were recruited in multiple intensive care units located in one university hospital. Main outcome measuresCommunication experience with the VidaTalk™ and emotions while communicating with the patient. Basic qualitative description and constant comparative techniques were used to code and analyse the text using ATLAS_ti (Version 7.5.18). FindingsThe VidaTalk™ opened up family-patient communication by allowing clear communication and expanding communication content. Family members felt happy and thankful to communicate with the patient. They also expressed feelings of relief and less frustration and less stress while communicating with the patient.​ On the other hand, the patient’s ability to express their worries or anxiety sometimes made families feel sad or distressed. ConclusionThe VidaTalk™ was helpful for family-patient communication. The VidaTalk™ may help families reduce psychological distress. However, ​expanded communication with critically ill patients may cause other negative feelings.

P0490 / #1769: THE CARING INTENSIVELY STUDY: FAMILY MEMBERS’ PERCEPTIONS OF PSYCHOLOGICAL OUTCOMES ONE YEAR FOLLOWING PEDIATRIC INTENSIVE CARE UNIT HOSPITALIZATION

Aims & Objectives: There is a dearth of research exploring family members’ perceptions of long-term psychological outcomes following PICU hospitalization. The aim of this study was to explore children and parents’ perceptions of long-term psychological and behavioral responses one year following PICU hospitalization. Methods: A secondary data analysis of qualitative outcome data collected as part of a Canadian mixed methods, multi-site prospective cohort study; the Caring Intensively Study. An interpretive descriptive design using semi-structured interviews with parents and children was conducted. Families were purposively selected to represent the larger cohort sample. Data were analyzed collectively to uncover themes within participants’ narratives. Results: We interviewed 16 mothers, 6 fathers, and 9 children (17 families). Participants reported their desire to re-establish a sense of family normalcy expressed in 5 themes: 1) PICU reminders and memories, 2) Changing perceptions of health and illness, 3) Re-establishing a family routine, 4) I am not the same, and 5) Altered relationships. Participants described significant emotional/behavioural changes during the year following hospital discharge. They experienced ongoing memories and reminders of the child’s PICU admission. Their experiences resulted in changed perceptions of their child’s health, with heightened vigilance regarding health and safety among parents and siblings. Participants described efforts to readapt to routine life once the child returned home, and found disruptions related to the illness and associated parental absence caused changes in family relationships. Conclusions: PICU hospitalization impacts the psychological well-being of all members of the family as they seek to re-establish a sense of normalcy one year following discharge.

Family members' attitudes towards telling the patient with Alzheimer's disease their diagnosis: a 20-year repeat study.

Exploring family members' attitudes to an Alzheimer's disease diagnosis compared to that of a study 20years prior by Maguire et al. (BMJ 313:529-530, 1996). The survey was a replica of that completed 20 years prior in the same department by Maguire et al. (BMJ 313:529-530, 1996). With ethics approval and consent, family members were surveyed regarding their attitudes towards a dementia diagnosis. Completed by doctors with 100 consecutive respondents accompanying patients to scheduled memory clinic appointments. Themes were generated, results compiled and compared to the previous study. Respondents are now over four times more likely to favour disclosure over non-disclosure to a patient (chi-squared 68.142, p < 0.0001). A substantial decrease is evident in those listing fear of evoking a negative reaction. Accordingly, there is an increase in those referring to the benefits of disclosure. The emerged theme was that of autonomy versus paternalism, with attitude shift reflecting that patient privacy is an established patient right, taking precedence over paternalistic preferences.

The Breaking Point: Family Dementia Caregivers’ Recognition of the Need to Intervene

Family dementia caregivers are an under-recognized and valuable geriatric workforce whose services have broad implications for health care systems. Family dementia caregivers may experience uncertainty, loss of role identity, involuntary role assumption, or undesirable life transitions. Subsequent unintentional mistreatment or abuse of their family care recipient may occur. Approximately 50% of caregivers admit to some form of mistreatment of their loved one who lives with dementia. Using Selder’s (1989) life transition theory, this qualitative study explored family members’ life transition process toward their new role identities as family dementia caregivers to better understand the personal and historical contexts of caregiving. Semi-structured interviews were conducted with 10 participants to answer the questions: How does one acquire the role of primary family dementia caregiver?” and “How do personal and historical contexts inform the family dementia caregiver role?” Richness of data drove our sample size. Epistemological integrity ensured trustworthiness and rigor. A modification of Colaizzi’s (1978) analytic method was used for interpretative phenomenological analysis. The emergent themes uncovered by participants’ statements included: “It’s my turn”, “the breaking point”, and “a fine line” with the subtheme “balancing dignity and safety”. Participants described their introspective journeys toward a changed reality as family dementia caregivers. Our findings suggested the need for early recognition and vigilance to prevent the exploitation and mistreatment of those with dementia. Rural agriculture-based family caregivers in our study described unique and challenging characteristics. Further research is needed to explore the implications of these contextual nuances for rural agriculture-based family dementia caregivers.

COVID-19 IDD: A global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers.

Background: This protocol outlines research to explore family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore their perceptions of the impact of COVID-19 in terms of demographics, living arrangements, access to services, social distancing, and carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 18 countries worldwide for international comparison. The survey team have extensive personal and professional networks and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin's Human Research Ethics Committee (HS-20-28-Linehan). Dissemination: Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.

COVID-19 IDD: A global survey exploring family members’ and paid staff’s perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers.

Background: This protocol outlines research to explore family members’ and paid staff’s perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore their perceptions of the impact of COVID-19 in terms of demographics, living arrangements, access to services, social distancing, and carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 18 countries worldwide for international comparison. The survey team have extensive personal and professional networks and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin’s Human Research Ethics Committee (HS-20-28-Linehan). Dissemination: Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.

Elephant in the room - Family members´ perspectives on advance care planning

Objective To explore family members’ experiences of advance care planning in nursing homes. Design Individual interviews. Thematic analysis. Setting Four nursing homes in Sweden. Subjects Eighteen family members of deceased nursing home patients. Main outcome measures Family members’ experiences of advance care planning in nursing homes. Results Family members’ experiences of advance care planning in a nursing home context involved five themes: Elephant in the room, comprising end-of-life issues being difficult to talk about; Also silent understanding, e.g. patient’s preferences explicitly communicated, but also implicitly conveyed. In some cases family members had a sense of the patient’s wishes although preferences had not been communicated openly; Significance of small details, e.g. family members perceive everyday details as symbols of staff commitment; Invisible physician, supporting nurse, e.g. nurse being a gatekeeper, providing a first line assessment in the physician’s absence; and Feeling of guilt, e.g. family members wish to participate in decisions regarding direction of care and treatment limits, and need guidance in the decisions. Conclusion Our study stresses the significance of staff involving the patient and family members in the advance care planning process in nursing homes, thereby adapting the care in line with patient’s wishes, and for the patient to share these preferences with family members. Education in communication related to the subject may be important to shape advance care planning. Key points Knowledge on advance care planning (ACP) in a nursing home (NH) context from the perspective of family members is limited. Role of the nurse in ACP is seen as central, whereas physician involvement is often perceived to be lacking. Significance of small details, perceive to symbolize staff competence and respect for patient autonomy. To limit family members’ feeling of guilt, communicating end-of-life issues is important in order to align ACP with patient preferences.

Family members' concerns about relatives in long-term care facilities: Acceptance of visiting restriction policy amid the COVID-19 pandemic.

The policy enforcing visiting restriction during the COVID-19 pandemic may cause feelings of social isolation among residents in long-term care facilities. This study aimed to explore family members' concerns for their relatives during the lockdown period, assess their level of acceptance of the visiting restriction policy and determine the associated factors. From the 156 family members interviewed, demographic data, satisfaction with overall care quality, worry and concerns for their relatives, acceptance of the visiting restriction and arrangement for the residents if cluster infections occur in the facility were recorded. Among the members interviewed, 83 (53.2%) were men; mean age of members was 56.3 ± 9.8; most were offspring of residents in the facility (n = 121, 77.6%), most visited the residents at least once a week (n = 113, 72.4%) before the lockdown. The most common concerns of the family members for their relatives were psychological stress (38.5%), followed by nursing care (26.9%) and daily activity (21.1%). Nearly 84.6% of those interviewed accepted the visiting restriction policy, and a higher satisfaction rating independently associated with acceptance of the visiting restriction policy (odds ratio 2.15). During the lockdown period, staff members should provide more psychological information about residents to their family members. Higher satisfaction rating was found to be independent of the acceptance of the visiting restriction policy. Therefore, good quality of care of the facility wins the trust of family members, and this might mitigate the tension between the family members and staff during a major crisis. Geriatr Gerontol Int ••; ••: ••-•• Geriatr Gerontol Int 2020; 20: 938-942.

Kuwaiti Families and Firm Performance in Non-Financial Listed Firms

Family variables positively affect firm performance from a theoretical and empirical perspective. However, this relationship has not been clearly examined in several countries, including Kuwait. This study explored family members’ role on boards of directors by investigating the relationship between family variables and firm performance using data from 93 non-financial firms listed on the Kuwait Stock Exchange (KSE) from 2016 to 2018. This study divided family variables into family ownership, family directors, family CEO, and ruling family. The results indicated that the presence of ruling family members on boards provided greater value for Kuwait’s listed firms; other variables produced mixed results.

Childhood epilepsy in contemporary society: risk perceptions among children and their family members

Although uncertainty is a key characteristic of epilepsy, and despite the close relationship between uncertainty and risk, our understanding of individuals’ experiences of childhood epilepsy in relation to risk is limited. In this paper I explore family members’ perceptions of the risks associated with the condition by drawing on qualitative data collected during 2013 and 2014 from 24 families with a child with epilepsy (including data from 28 parents, 13 children with epilepsy and 14 siblings). The diagnosis of childhood epilepsy provided parents and children with a new framework that they used to evaluate risks posed by the physical environment. Indeed, roads, water and heights were reconceptualised when viewed through an ‘epilepsy lens’ and were seen to present more risk to the child with epilepsy in comparison to the level of risk the same hazards posed to their siblings or peers. Furthermore, while parents described prioritising new and reconceptualised physical risks to their child, the children with epilepsy were more concerned about being stigmatised by their peers. The children’s discussions surrounding stigma suggest that this results from interactions with their peers, rather than stigma being learnt within the family, as previous studies have suggested. Overall, I demonstrate that risk is a central feature of contemporary experiences of epilepsy for children with the condition and their parents, but that parents and children perceive and prioritise risks differently.

Grandmothers as Change Agents: Developing a Culturally Appropriate Program to Improve Maternal and Child Nutrition in Sierra Leone.

ABSTRACTBackgroundGlobal recommendations on optimal maternal and child nutrition (MCN) practices are clear; however, there is limited literature 1) exploring how roles of family members influence those practices and on 2) designing programs accordingly. Researchers using a family-systems approach in the Global South find that grandmothers often play a vital role in MCN, yet most nutrition programs narrowly target mothers, thereby potentially limiting effectiveness.ObjectivesThis article reports on the results of qualitative research exploring the roles and influence of family members on MCN in southern Sierra Leone, the local MCN beliefs and practices, and how those findings informed the design of a culturally appropriate program.MethodsFocus group discussions (FGDs) were conducted with mothers, fathers, and grandmothers in 9 communities in Bonthe District, Sierra Leone. We used participatory tools to explore family members’ roles and local MCN beliefs and practices. Interviews were recorded by notetakers and coded and analyzed using a content analysis approach.ResultsA total of 88 mothers, 125 grandmothers, and 79 fathers participated in the FGDs. All groups indicated that 1) grandmothers are the culturally designated advisors and supervisors of women on MCN issues and 2) mothers are not autonomous decision makers and are greatly influenced by grandmothers. The research identified both beneficial MCN practices and gaps between optimal and existing MCN practices—particularly related to maternal diet during pregnancy and exclusive breastfeeding for 6 mo. Research findings were used to design a grandmother-inclusive program.ConclusionsOur research showed that mothers are embedded in a family system of caring and supervision where grandmothers have primary influence on MCN practices, clearly supporting the need for grandmothers to have a central role in community MCN programs. It also points to the need for increased use of a family-systems approach in designing public health nutrition programs.

Being a spectator in ambiguity-Family members' perceptions of assisted bodily care in a nursing home.

The aim of this study was to explore family members' perceptions of assisted bodily care in a nursing home. Many older people living in nursing homes need assisted bodily care, provided by assistant nurses. This means exposedness, as the assistance is often provided under stress, but also brings pleasure. Family members, who may wish to and often benefit from continuing to provide assisted bodily care, are perceived as visitors and are expected to relinquish the assisted bodily care to the assistant nurses. This study has a qualitative design with a phenomenographic approach. Data were collected through semi-structured interviews (n=13) with family members of older people who were aged>80, permanently living in a nursing home, suffering from multimorbidity, and in daily need of assisted bodily care. The data were analysed using a phenomenographic method. Three categories of description presenting an increasing complexity were identified. The family members perceived that assisted bodily care is built upon a respect for the older person's self-determination, practically supported by assistant nurses, and complemented by family members. In the family members' perceptions, assisted bodily care signifies ambiguity, as they find themselves balancing between the older persons' need for self-determination and need for help, and, further, between their trust in the assistant nurses' skills and their own perceived inadequacies in intimate assisted bodily care. Policies that address the family members' role in nursing homes are needed. Furthermore, time for collaboration is needed for assistant nurses to inform and explain care decisions, become aware of the family members' perceptions of their situation and learn from them.

Family members' perceptions of a Singing Medicine project in a children's hospital.

The aim of this study was to explore family members' perceptions of a Singing Medicine project undertaken by children with long-term conditions in one children's hospital. A qualitative approach was used involving semi-structured interviews with the family members of children aged 3-14 years who had long-term conditions and were being cared for at one children's hospital in England. Interviews were digitally recorded, anonymised and stored in a password-protected space. Data were analysed using thematic analysis. Analysis identified five themes: people in purple shirts; music and emotions; being part of a 'hospital family'; distraction therapy; and lasting effects and life after illness and death. The negative effect for children of being separated from their homes and families during long-term hospital stays was evident, but positive effects, such as developing new relationships, were also identified. Participating in the Singing Medicine project provided children with opportunities to express themselves. The concept of belonging to a hospital family emerged from the study, which could potentially reduce stressors and enhance children's well-being and capacity to cope with long-term illness. The findings showed that participation in 'arts-in-health' initiatives such as the Singing Medicine project was associated with benefits for children with long-term conditions and their families, such as a reduction in negative emotions and enhanced well-being through distraction and the sharing of positive experiences. Ensuring that children who spend prolonged periods of time in hospital have opportunities to play and express themselves is a priority for healthcare services.