Families Of Children Research Articles

The perceived social support of parents having bipolar disorder impacts their children’s mental health: a 10-year longitudinal study

BackgroundThe offspring of parents with bipolar disorder (OBD) are at higher risk of developing psychopathology than the offspring of parents with no affective disorder (control). In addition to genetic predisposition, childhood adversity and a stressful family environment are important risk factors for the OBD. Protective factors in parents, such as social support and coping strategies, may buffer the effects of stress on at-risk children. This study tested whether parents’ social support and coping style attenuated the link between risk status (OBD vs. control) and psychopathology in offspring.MethodsDuring offspring’s middle childhood, parents underwent a diagnostic interview and completed social support and coping style questionnaires. Sixty-nine OBD (39 female) and 69 control (29 female) offspring between ages 13 and 29 completed a diagnostic interview approximately 10 years later.ResultsParents’ social support satisfaction moderated the link between offspring risk status and their development of substance use disorder (SUD) symptoms (F(1,131) = 5.90, p = .017). Parents’ social network size moderated the link between offspring risk status and their development of anxiety and depression symptoms in an unexpected direction (F(1,131) = 5.07, p = .026). No effects of parents’ coping style were found.ConclusionsAmong the OBD, having parents with greater social support satisfaction and, unexpectedly, a smaller social network buffered their development of SUD and depression and anxiety symptoms by early adulthood. Parents’ social support may thus have a protective function for children in these high-risk families.

Examining Childhood Trauma Experiences in Relation to Women’s Attachment Style, Exposure to Violence and Partner Characteristics

Main emphasis of this research is to illuminate the intertwined cycles of neglect/abuse and violence that women experience throughout their lives and to identify potential strategies for social work interventions in this context. At this point, the study explains that violence can perpetuate itself in a cyclical manner from childhood and that this has effects on future partner relationships and partner characteristics in the case of Turkiye. The study also examines women’s self-assessed characteristics of their partners. The study was conducted within the scope of cross-sectional descriptive model and 260 women participated in the study. The participants were mostly exposed to emotional neglect during childhood. The attachment style of most of the participants was anxious ambivalent. In addition, they also experienced emotional violence from their spouses the most. The spouses of the participants were directive. There is a significant relationship between childhood trauma and exposure to violence. Adverse childhood experiences have an effect on the participants’ attachment style, partner characteristics and exposure to violence. In order for women to have safe and nonviolent partner relationships in adulthood, it is recommended that the quality and quantity of studies focusing on the family in childhood and the prevention of neglect/abuse be increased.

Value of combining targeted emergency nursing with psychological nursing in children with febrile convulsions.

Febrile convulsions are a common pediatric emergency that imposes significant psychological stress on children and their families. Targeted emergency care and psychological nursing are widely applied in clinical practice, but their value and impact on the management of pediatric febrile convulsions are unclear. To determine the impact of targeted emergency nursing combined with psychological nursing on satisfaction in children with febrile convulsions. Data from 111 children with febrile convulsions who received treatment at Nantong Maternal and Child Health Care Hospital between June 2021 and October 2022 were analyzed. The control group consisted of 44 children who received conventional nursing care and the research group consisted of 67 children who received targeted emergency and psychological nursing. The time to fever resolution, time to resolution of convulsions, length of hospital stays, Pittsburgh Sleep Quality Index, patient compliance, nursing satisfaction of the parents, occurrence of complications during the nursing process, and parental anxiety and depression were compared between the control and research groups. Parental anxiety and depression were assessed using the Hamilton Rating Scale for Depression (HAMD) and the Hamilton Rating Scale for Anxiety (HAMA). The fever resolution, convulsion disappearance, and hospitalization times were longer in the control group compared with the research group (P < 0.0001). The time to falling asleep, sleep time, sleep quality, sleep disturbance, sleep efficiency, and daytime status scores were significantly better in the research group compared with the control group (P < 0.0001). The HAMD and HAMA scores for parents of children in the research group were lower than the scores in the control group after nursing (P < 0.05). Compliance with treatment of children in the research group was higher than in the control group (P < 0.05). Parental satisfaction with nursing in the research group was higher than in the control group (P < 0.05). The total complication rate of children in the control group was higher than in the research group (P < 0.05). Combining psychological nursing with targeted emergency nursing improved the satisfaction of children's families and compliance with treatment and promoted early recovery of clinical symptoms and improvement of sleep quality.

Eye movements desensitization and reprocessing with finger movements and Elite mobile health software on guilt feeling of parents of children with autism: A randomized trial.

INTRODUCTION: Caring for an autistic child at home can be challenging for parents, as it can make it difficult to balance their responsibilities. This imbalance can negatively affect the emotional well-being of the caregiver and lead to feelings of guilt. While this is a known issue, there may be gaps in knowledge specific to Iran. In this study, a new method was introduced to address this issue. This study aimed to examine the impact of desensitization with eye movements and reprocessing (EMDR) on reducing parental guilt among autistic children's families. We aim to examine the effectiveness of two different treatment methods. This study involved 90 parents (60 mothers, 30 fathers) of autistic children randomly assigned to either an experimental or control group. The two experimental groups received a 45-min intervention session once a week for 3 weeks, while the control group did not receive any intervention. Data on feelings of guilt was collected using a questionnaire. After 30 days, both groups took a follow-up test. The data were analysed using statistical software. This study found that there were significant differences in guilt feelings among different groups of EMDR therapy and a control group. Specifically, no significant differences were observed in the mean guilt scores between the experimental and control groups at the pre-intervention stage (p > .05). However, the experimental groups exhibited significantly lower mean guilt scores immediately after the intervention and 1 month later than the control group (p < .05). Immediately after the intervention and 1 month later, no significant differences were observed between the two experimental groups (p > .05). The findings of this study demonstrate the efficacy of desensitization treatment using eye movements and reprocessing in reducing feelings of guilt among autistic children's parents. In the follow-up phase, it seems that the two-way stimulation method with finger movements is more effective than Elite software in terms of the continuity of the effect. Healthcare providers are encouraged to learn and use these methods to help prevent and treat psychological issues in autistic children.

Insights into the associations of polygenic risk scores and parents' socioeconomic status on students' educational achievement

A complex and multifaceted problem that has been widely studied in the field of education is the impact of genetic variables and parents' socioeconomic status (SES) on students' academic achievement. Children from low socioeconomic backgrounds struggle academically due to scarce resources, educational opportunities and developmental delays. For successful interventions and policies aiming at expanding educational opportunities and reducing performance gaps, it is essential to understand the relationship between these elements. To achieve this, we investigate the complex relationship between genetic characteristics, socioeconomic status and their combined effect on children's educational attainment. Families' financial position and children's acquired DNA differences, which can be integrated into Polygenic Risk Scores (PRS), are the two most important factors of children's educational success obtainable during childbirth. The sample consisted of 1451 low-income teenage females (n=718) enrolled in rural public schools between the ages of 14 and 19. We show that throughout the academic years, both the PRS and SES predict higher levels of educational achievement. In addition to predicting first-year academic success, we find that SES and PRS explain why students' grades fluctuate so much over a school year. Children with high PRS and high SES origins enroll in university at a rate of 70%, in contrast to 30% among individuals with lower PRS and lower SES families. We determine the relationships between SES and PRS as well as academic success are usually positive, indicating that their combined impact is significant for students at the extreme ends of the dispersion.

The quality of the stepfather–child relationship in sole and joint physical custody

AbstractObjectiveThis study examines whether the quality of the stepfather–child relationship differs among sole physical custody (SPC) and joint physical custody (JPC) families and compares the association between the father–child and the stepfather–child relationship across the two physical custody arrangements.BackgroundAn increasing number of families opt for JPC after separation or divorce. Because children in JPC families spend more time with their biological father than children in mother SPC families, the question arises whether JPC affects the quality of the stepfather–child relationship.MethodWe investigated 279 SPC and 182 JPC stepfather families with children aged 1 to 14 from the Family Models in Germany study. Ordinary least squares regression models and interaction effects were estimated.ResultsThe quality of the stepfather–child relationship was generally high in both SPC and JPC families and did not differ between the two arrangements. The father–child relationship was positively, albeit weakly, associated with the stepfather–child relationship in both arrangements, indicating spillover effects.ConclusionJPC does not affect the quality of the stepfather–child relationship.ImplicationsThis study does not provide any evidence that JPC is an ill‐suited physical custody arrangement when considering the quality of relationships in stepfamilies.

Dream vacations of children: exploring key motivations and preferred experiences by drawing

ABSTRACT Children have an important place in the family travel market as they have a strong influence on holiday decisions and their satisfaction can directly affect their parents’ satisfaction and future behavioural intentions. To attract this market and provide child tourists with a satisfying holiday experience, it is important to better understand their motivations and preferences. The aim of this research is to identify children's motivations and preferred destinations and activities in family tourism context. In this qualitative study, where children's voices were taken into account by giving them the opportunity to express their dream family holiday experience ‘drawing’, one of the widely preferred child-friendly techniques to reveal children's perspectives, was used. A total of 103 literate children aged 6–17, residing in five different cities in four regions of Turkey, participated in the research. The data were analyzed using the visual content analysis technique in Maxqda software. The results show that children's family holiday motivations can be divided into four categories: family bonding, escaping and exploring new places, activities and play, rest and relaxation. Additionally, the activities that children seek in destinations include opportunities for group activities, activities related to nature, cultural experiences, and built environment experiences.

Educator wellbeing and family engagement in Australian early learning settings: perspectives of early childhood educators and families

AbstractWhile the COVID-19 pandemic brought with it multiple challenges for families and the Early Childhood Education and Care (ECEC) workforce, it also highlighted the essential role of ECEC in the lives of children and families and presented unique opportunities for innovation and learning. The current study sought to explore learnings from this uniquely challenging period, including the factors and strategies that best supported educator wellbeing and family engagement in ECEC settings, from the perspectives of families, centre directors and educators. In 2021, 104 Centre Directors/Educators and 102 families completed online surveys exploring wellbeing and educator–family relationships. Correlations suggest that robust professional wellbeing and resilience are potential enabling factors for strong family engagement, and that supportive organisational structures in ECEC settings are a protective factor for both educator wellbeing and family engagement. In addition, five effective family engagement strategies were derived from the qualitative data: (1) drawing on personal and professional knowledges to enrich children’s learning at home; (2) prioritising regular and reliable communication with families; (3) maintaining familiar relationships and a sense of community; (4) providing person-centred support and a bridge to other services; and (5) nurturing mutually supportive educator–family relationships. Learnings provide important insights that may inform ongoing quality improvements across different ECEC contexts, and to help safeguard against the negative impacts of future global crises.

The role of family and school during lockdown: Notable differences regarding children's satisfaction with their support

AbstractStudying the support received from key agents in children's lives, family and school, from the point of view of the children themselves, will allow us to be better prepared to guide them in a post‐pandemic scenario. The main objective is to study the perceptions and evaluations of students between the ages of 9 and 17 regarding the guidance and support they received during the pandemic, and more specifically the help they received from their family and school. With a quantitative design, a questionnaire was administered to a sample of 1216 children (M = 14.3; SD = 2.468), from five geographical areas in Catalonia, Spain. Two multiple regression models were built with a good fit (p &lt; .001) and explanatory capacity (adjR2 = 0.42 and adjR2 = 0.45). One of the outstanding results is the huge difference between the children's satisfaction with the help received from their family (very high) and from school (very low). In addition, children who identify as non‐binary as well as secondary school students show much lower average levels of satisfaction with the support they receive. The ultimate purpose of this article is to make proposals to strengthen personalization and support from the perspective of community socio‐educational resilience.

Examining Caregiver- and Family-Level Psychosocial Influences on Child Oral Health Behavioral Outcomes in Racially and Economically Minoritized Urban Families.

Understanding the pathways linking caregiver- and family-level psychosocial factors and child oral health behaviors is critical for addressing oral health disparities. The current study examined the associations between caregiver psychosocial functioning and family chaos and child toothbrushing behaviors in children at high risk for poor oral health outcomes. Data were drawn from the baseline wave of the CO-OP Chicago Cohort Study (U01DE030067), a longitudinal study on child/caregiver dyads exploring oral health behaviors and caries development in young children (N = 296 dyads; child mean age = 5.36, SD = 1.03; caregiver mean age = 33.8 years, SD = 6.70; caregiver race = 43% Black; caregiver ethnicity = 55% Latinx). The oral health behavioral outcomes included child toothbrushing frequency, child plaque levels, and caregiver assistance with child toothbrushing. The data included demographics; caregiver depression, anxiety, post-traumatic stress disorder (PTSD) symptoms, social functioning, social support, and resilience; and family-level household chaos. Multiple regression models indicated that greater household chaos was significantly related to lower caregiver assistance with child toothbrushing (p = 0.0075). Additionally, caregiver anxiety and PTSD symptoms as well as number of children in the home significantly predicted higher levels of household chaos (p < 0.01). Notably, 18% of caregivers reported clinically significant PTSD. The relationships between caregiver-level psychosocial factors and child oral health behaviors were not significant. The results suggest household chaos may play an important role in child oral health behaviors and highlight the importance of investigating family-level factors for understanding and addressing child oral health risk.

Strengthening Resilience: Parent Experiences in Developing their Children Executive Function Skills

Executive functions (EF) play a key role in child development. However, Thai parents’ knowledge and practice skills for their children’s EF are still limited. This study aimed to explore the lived experiences of Thai parents in developing their children’s EF skills in a semi-rural sociocultural context. The theme pattern was interpreted using the Heideggerian hermeneutic phenomenological approach, and the themes were reflected in Van Manen’s fundamental existential themes of the life world. As many as 16 parents were selected using the purposive sampling method. Semi-structured interviews were conducted. The results of this study revealed seven themes: 1) strong resilience, self-confidence, and responsibilities; 2) challenges in handling misbehaving family members and children with poor self-control; 3) living in a natural and peaceful environment; 4) staying away from terrible things; 5) practicing time management; 6) trying to use the mobile phone safely; and 7) organizing belongings and toys. In conclusion, nurses can help parents to increase their children’s EF skills by strengthening parents’ resilience, self-confidence, and responsibilities; supporting parents and co-parents to deal with terrible situations; time management; and preparing a safe, green, and natural environment for children to develop their EF skills.

Researching the Everyday Educational Lives of Low-Income Families: The Importance of Researcher and Participant Contexts

ABSTRACT This paper highlights the importance of considering both researcher and participant contexts when exploring everyday educational lives. It emerges during a period of increasing and sustained social inequality in England, and against a backdrop of increasingly tight research timeframes and resources in higher education. Drawing on a project engaging low-income families in Greater London, the paper takes the everyday as its conceptual focus and questions how we can be critically attentive to everyday educational lives if we struggle to access and develop research relationships with particular social groups. We offer empirical insight into the hesitancies towards, and avoidances of, research participation that centre around knowledge, fear, and trust, and which are heightened concerns where aspects of family life, parenting, and children come to the fore. The paper considers how these can be mitigated in an academic environment where limited time and resourcing shape possibilities of research engagements and offers practical moves linked to research relationships, relevance and presence for how researchers can address these challenges to enable research to be more inclusive.

Experience of percutaneous closure of small to large patent ductus arteriosus with Nit-Occlud® device in a tertiary referral hospital in Colombia.

The decision to close patent ductus arteriosus should always be individualized and taken together with the child's family once the risks and benefits of both choices have been exposed. This study aims to report the experience and outcomes in patients undergoing endovascular closure of small to medium-size PDA with a Nit-Occlud® device in a tertiary referral hospital in Colombia. Longitudinal descriptive study, which included all patients under 18 years of age who underwent percutaneous ductal closure with Nit-Occlud® device between January 1, 2011, and February 1, 2023. Patients with associated complex congenital heart disease requiring surgical management, pregnant patients, and patients with incomplete data regarding studied variables were excluded from the study. Eighty-seven patients were documented, with a mean age, weight, and height at closure of 51 months, 14 kg, and 95.83 cm, respectively. About 70% of the patients (n = 61) were female, 76% were under 6-years-old and only one patient was over 15. The average size of the ductus at the pulmonary end was 2 mm. Four of the total number of patients did not achieve PDA closure during the procedure. Of the remaining 83, complete immediate closure was achieved in 81 patients. A device exchange for a larger device was required during the same procedure in one of the cases. Two patients presented residual shunt of 0.5 mm during follow-up, and one required a new procedure for device closure 10 months later. Only one device presented repeatedly embolization to the aorta, requiring surgical removal. As a technical difficulty, one device presented repeated passage into the aorta, so it was decided to remove it before releasing it to avoid complications, and given the complex anatomy of the ductus, surgical closure was indicated. Among the complications, one patient presented a hematoma of the subcutaneous tissue in the right thigh, which improved with medical management, and no deaths related to the procedure were registered. Using the Nit-Occlud® device to close small to moderate-sized ductus remains a safe and effective strategy with successful closure rates at 1-year follow-up irrespective of age, weight, height, or whether it involves a small or medium-sized duct. Despite our limitations, results concerning adverse effects are comparable to those observed in multicentric studies conducted in other regions.

Value of improved nursing measures and enhanced nursing management to reduce the occurrence of adverse events in pediatric infusion.

Intravenous infusion is a common method of drug administration in clinical practice. Errors in any aspect of the infusion process, from the verification of medical orders, preparation of the drug solution, to infusion by nursing staff, may cause adverse infusion events. To analyzed the value of improving nursing measures and enhancing nursing management to reduce the occurrence of adverse events in pediatric infusion. The clinical data of 130 children who received an infusion in the pediatric department of our hospital from May 2020 to May 2021 were analyzed and divided into two groups according to the differences in nursing measures and nursing management: 65 patients in the control group received conventional nursing and nursing management interventions, while 65 patients in the observation group received improved nursing measure interventions and enhanced nursing management. The occurrence of adverse events, compliance of children, satisfaction of children's families, and complaints regarding the transfusion treatment were recorded in both groups. The incidence of fluid extravasation and infusion set dislodgement in the observation group were 3.08% and 1.54%, respectively, which were significantly lower than 12.31% and 13.85% in the control group (P < 0.05), while repeated punctures and medication addition errors in the observation group were 3.08% and 0.00%, respectively, which were lower than 9.23% and 3.08% in the control group, but there was no significant difference (P > 0.05). The compliance rate of children in the observation group was 98.46% (64/65), which was significantly higher than 87.69% (57/65) in the control group, and the satisfaction rate of children's families was 96.92% (63/65), which was significantly higher than 86.15% (56/65) in the control group (P < 0.05). The observation group did not receive any complaints from the child's family, whereas the control group received four complaints, two of which were due to the crying of the child caused by repeated punctures, one due to the poor attitude of the nurse, and one due to medication addition errors, with a cumulative complaint rate of 6.15%. The cumulative complaint rate of the observation group was significantly lower than that of the control group (P < 0.05). Improving nursing measures and enhancing nursing management can reduce the incidence of fluid extravasation and infusion set dislodgement in pediatric patients, improve children's compliance and satisfaction of their families, and reduce family complaints.

Explaining the negative effects of workplace incivility on family lives: a moderated mediation model of surface acting and resource-providing variables.

The effects of workplace incivility have been understudied in educational settings. To expand incivility research to educational professions, the present research investigates whether, how, and when workplace incivility deriving from different sources (coworkers, supervisors, and outsiders) is related to work-to-family interference (WFI) of preschool teachers. Drawing on the conservation of resources theory, the present study proposes that workplace incivility and subsequent maladaptive emotion labor strategies (i.e., surface acting) jointly create a resource-depletion mechanism contributing to elevated WFI and two resource-providing variables (supervisor work-family support and psychological detachment after hours) function as potential mitigating factors to break the resource-depletion mechanism. This study used a female-dominated sample (i.e., preschool teachers) found that workplace incivility from insiders (supervisors and coworkers respectively) and external stakeholders (child's family members) all positively linked to WFI, and surface acting mediated these relationships. Moreover, moderated mediation analyses indicated that psychological detachment buffered the mediated effect of surface acting on WFI, whereas supervisor work-family support did not. Findings deepen the understanding of why and when workplace incivility influences employees' family lives, as well as point to future intervention strategies.

Job Loss and Migration: Do Family Connections Matter?

Abstract This paper utilizes administrative employer–employee data to analyze the effect of job loss on interregional migration and to study how family connections, related to childhood family members and birth region preferences, shape these location choices. The results reveal that job loss due to establishment closures increases the probability of interregional migration by nearly 80 %. While local family member connections and birth region preferences pose substantial obstacles to moving, they do not necessarily lead to relocation in response to job loss. Instead, displaced workers tend to migrate to non-birth regions where they have no observed family member connections, although higher economic gains in these regions may partly offset the loss of utility resulting from these factors.

The vulture in the room

ABSTRACT This case study explores the story of Eva, a 37-year-old woman who has embarked on a journey of psychotherapy to navigate the complexities of her past traumas and their manifestations in her present inability to set boundaries and assert her needs. The narrative unfolds through the intersubjective therapeutic relationship with a novice therapist who is also grappling with personal issues of competence and parallel dynamics of past abuse. The case illuminates the complexities of Eva’s life, from her violent childhood and oppressive family environment that demanded success at all costs to her traumatic experiences in academia and romantic relationships. Through the lens of intersubjective-systems theory and focusing on Brandchaft’s systems of pathological accommodation, the paper explores the patient’s struggle with self-cohesion and the internalized need to accommodate others to maintain a sense of security and attachment. The therapeutic encounter, characterized by a twinship in trauma becomes a site of transformation in which both patient and therapist navigate their vulnerabilities and strengths. The turning point in therapy occurs when the therapist inadvertently assumes the role of an authoritative figure, prompting Eva to express her own experience assertively.

Responses to the needs of families with children with disabilities in Spain: The voices of families and professionals

Children with disabilities and their families have the right to access Early Childhood Intervention (ECI). Family members should act as active agents of the intervention. In this sense, service professionals should offer support and intervention to improve family well-being and child development. We analyzed the experiences of parents of children with disabilities users of ECI services and the professional coordinators in the Balearic Islands (Spain) from a phenomenological-hermeneutic approach. Data collection was through semi-structured interviews and focus groups. A total of 5 coordinators and 30 family members participated in the study. The results indicate five categories: making ECI visible, reception phase, family well-being, intervention, and current barriers. The findings project the need to make ECI visible in policies and administrations, as well as plans to raise social awareness of child disability. Protocols must be found to facilitate access to services for children and families. Implications for the improvement of ECI are proposed.

Dalgleish scores difference amongst professional roles within the greater child welfare community

BackgroundThe central tension of the child welfare system is the need to protect children while also encouraging the stability of families. Researchers have attempted to capture this conflict through the use of the Dalgleish Scale (Fluke et al., 2016), which measures attitudes about family preservation versus child safety. ObjectiveThough used multiple times by researchers over the last decade to test state agency child protection worker's beliefs, the Dalgleish Scale has never before been given to the wider child welfare community. Participants settingTaken from data collected from more than a 1000 U.S. participants as part of two separate online child welfare decision making survey vignette experiments, this present research is the first to administer the Dalgleish to people from multiple professional roles within the child welfare system. MethodsDalgleish scores for 13 child welfare professional roles were compared using Mann Whitney U to test for significance and Cohen's d for effect size, while demographic variables within the roles were tested using ANOVA. ResultsThe results demonstrate significant differences in beliefs about child safety and family preservation between the roles within the child welfare system. On average lawyers tended to rate family preservation higher than any other role. Foster parents, CASA/GAL workers and former foster youth tended to score the highest on child safety scores. State agency caseworkers scored in the middle though still on the child safety side of the scale. ConclusionsThese significant variances in the Dalgleish score based on role suggest that participants’ professional role within child welfare has an impact on how they view the central dynamic question of family preservation and child safety.

Navigating parenthood in the face of amyotrophic lateral sclerosis: A qualitative exploration of partner experiences.

Among people diagnosed with Amyotrophic Lateral Sclerosis (ALS), there are parents with children living at home. Children in families experiencing severe illness are exposed to stress and health risks. Since 2010, healthcare personnel in Norway must assess whether patients have children under 18 years of age and make sure the children's needs for support are met. A child's ability to cope with family life affected by a serious illness depends on how the parent without the disease manages the situation. Little is known about how the partner of someone affected by ALS manages being next of kin and a parent simultaneously, and what kind of support they need. During 2021-2022, six semi-structured interviews were conducted with partners to persons with ALS, whom had children living at home. The interviews were transcribed verbatim and analysed through qualitative content analysis. Three themes with subthemes emerged: (1) Together, yet alone; (a) restricted home life, (b) missing the sharing of responsibilities and tasks as equal parents, and (c) caught between children's and partner's needs; (2) Experience of coping while waiting for death; (a) cherishing the moments, (b) sense of coping and concern, and (c) ensuring to get recharged; and (3) Support in times of need; (a) difficult to ask the network for help and (b) the healthcare system does not see the whole family. Our respondents felt alone, caught between the needs of their children and partner, without necessary support from the services, and were left to handle everyday life with all new challenges on their own. Future healthcare services need to consider the challenges faced by families dealing with life-limiting illnesses. A family-focused perspective is needed, so is peer support and interventions that address both emotional and practical aspects of life with an ill partner.