About

Professor Kristin Long leads the Child and Family Health Lab at Boston University, which maintains an active program of externally-funded research focused on family and cultural aspects of chronic illness and disability across the lifespan. The lab emphasizes the integration of undergraduate and graduate students into research projects to provide in-depth, hands-on training in research methodology. A key mission of the lab under Professor Long's direction is to maintain partnerships with community organizations and healthcare providers, offering consultation on the importance of family and culture in childhood chronic illnesses, disabilities, or mental health concerns. Professor Long's work is centered on understanding and addressing the complex interactions between family dynamics, cultural factors, and health outcomes in children and families affected by chronic conditions.

Research topics

• Psychology
• Clinical psychology
• Medicine
• Psychiatry
• Sociology
• Nursing
• Engineering
• Social psychology
• Developmental psychology
• Medical education

Selected publications

• Siblings’ Cancer-Related Post-Traumatic Stress Symptoms and Involvement in Pediatric Cancer Treatment

  Clinical Practice in Pediatric Psychology · 2025-05-02 · 5 citations

  articleSenior author

  Objective: Many siblings of youth with cancer experience cancer-related post-traumatic stress symptoms (PTSS). The specific experiences that siblings find traumatic and how PTSS relates to siblings’ involvement in treatment are unknown. This study characterized potentially traumatic cancer-related experiences for siblings and explored the relationship between siblings’ PTSS and involvement in cancer treatment. Methods: Parents ( N = 16) and siblings ( N = 22) from 16 families completed qualitative interviews about siblings’ involvement in treatment. Siblings completed the Child PTSD Symptom Scale and were categorized into “low” and “high” PTSS groups. Interviews were analyzed using qualitative methods, stratified by PTSS group. Results: Potentially traumatic experiences included: learning the diagnosis, seeing the patient in the hospital, observing physical indicators of cancer, witnessing/hearing about the patient’s medical care or medical emergencies, and seeing other pediatric cancer patients. Treatment involvement themes differed by PTSS group. Siblings with low PTSS gained familiarity with treatment through consistent involvement, were included in involvement decisions, and had opportunities to learn about cancer and express emotions. Siblings with high PTSS had limited/inconsistent treatment involvement, felt minimal control over their involvement, and encountered barriers to accessing cancer information and expressing emotions. Conclusions: Findings inform best practices in family-centered care for siblings of youth with cancer.

  PublisherDOI

• Siblings' current and future involvement in the lives of autistic adults

  Family Relations · 2025-12-12

  articleOpen accessSenior author

  Abstract Objective The goal was to describe adult siblings' and service providers' perspectives regarding siblings' current and future involvement in the lives of autistic adults. Background Service providers often support families of autistic adults to prepare for the future, but they seldom include adult siblings in the future planning process. Despite frequently assuming supportive roles, little is known about adult siblings' roles in autistic adults' lives. Method We conducted focus groups and individual interviews with 13 adult siblings (ages 21–58) and 17 service providers serving autistic adults and/or their families. Interviews were systematically coded and analyzed using thematic analysis. Results Adult siblings assume a variety of roles in autistic siblings' lives and expect continued or increased involvement in the future, but they lack clarity regarding future roles. Adult siblings and providers emphasize the importance of adult siblings' involvement in future planning. Although adult siblings desire earlier involvement, providers hesitate to proactively involve adult siblings in future planning due to uncertainty about adult siblings' willingness to provide support. Conclusions Considering the whole family and supporting adult siblings in family future planning may increase service providers' engagement with adult siblings, thereby improving outcomes for both adult siblings and autistic adults. Implications Service providers should proactively support adult siblings' involvement in family future planning in collaboration with autistic individuals and other family members.

  PublisherOA PDFDOI

• Transportation Access in the Transition to Adulthood: Navigating a Neurotypical World on the Autism Spectrum

  Journal of Autism and Developmental Disorders · 2025-08-04

  articleOpen accessSenior author
  PublisherOA PDFDOI

• “They had to watch”: How parents perceive the suffering of siblings of children with cancer

  Palliative & Supportive Care · 2025-01-01 · 2 citations

  articleOpen access

  AIMS: While many siblings of children with cancer demonstrate resilient outcomes, they also face their own unique experiences that increase their risk for acute and long-term psychosocial difficulties. It is accepted that children undergoing cancer treatment experience suffering, the alleviation of which is a main goal of palliative care, yet research has not yet explored whether siblings experience their own suffering. This work aimed to determine whether parents perceive that their child(ren) without cancer suffered throughout the illness course and how that suffering would be described. METHODS: Using literature and expert input, a survey was developed to elicit caregivers' perceptions of suffering in their children with and without cancer and was disseminated through the American Childhood Cancer Organization. Responses regarding sibling suffering were analyzed, considering differences in accounts between bereaved caregivers and those whose child with cancer remains living. RESULTS: A total of 202 parents (81 bereaved, 121 whose child with cancer remains alive) responded. Themes of sibling suffering include disconnection and/or displacement, lack of stability and certainty, emotional consequences, bearing witness, and lasting impact. One distinct theme, suffering as continued loss, emerged from bereaved parents' responses. SIGNIFICANCE OF RESULTS: Both parental groups described sibling suffering similarly despite different outcomes for their child with cancer. The idea of sibling suffering by bearing witness to what the child with cancer experienced is unique and worthy of further understanding. This work highlights the need for sibling and parent psychosocial assessment and palliative intervention throughout cancer treatment. Gaining longitudinal input from siblings and parents regarding the experience of suffering is a critical next step to develop tailored interventions.

  PublisherOA PDFDOI

• Perspectives on Health-Related Social Needs Screening in Primary Care Among Black and Latine Patients

  JAMA Network Open · 2025-08-28 · 3 citations

  articleOpen access1st authorCorresponding

  Importance: Screening for health-related social needs (HRSNs) has become the standard of care, but little is known about patients' perceptions of whether and how screening and referral should be conducted, particularly among Black and Latine populations, who have variable rates of screening and resource receipt. Limited consideration of racism within HRSN frameworks and research underlies concerns that HRSN screening and referral systems may paradoxically exacerbate inequities. Objective: To characterize Black and Latine patients' perspectives regarding (1) the suitability of HRSN screening and referral systems within primary care, (2) decision-making regarding HRSN disclosure, (3) contextual barriers and facilitators of equitable screening and referral, including processes underlying inequitable outcomes, and (4) implementation recommendations. Design, Setting, and Participants: In this qualitative study, data collected from April to August 2023 were audio-recorded, transcribed, systematically coded, and analyzed using applied thematic analysis. The study was conducted at 4 urban family medicine clinics in Worcester, Massachusetts. Participants self-identified as Black or African American and/or Latine and spoke English, Spanish, and/or Portuguese. Enrollment ceased upon reaching thematic saturation. Main Outcomes and Measures: Grounded in the Health Equity Implementation Framework, semistructured interviews probed implementation barriers and facilitators to HRSN screening and referrals. Qualitative data were stratified by race and ethnicity and language. Results: The study included 32 participants (mean [SD] age, 43 [23] years; 23 women [72%]; 9 [28%] Black; 22 [69%] Latine; 1 [3%] both), who emphasized the importance of HRSN screening and referral systems. However, mistrust in health care systems fueled reservations about disclosing HRSNs. Participants described needing to actively weigh high perceived risks (eg, loss of privacy, judgment, or government agency involvement) with low expectations of receiving resources, ultimately limiting disclosure. Within clinics, participants explained that achieving equitable screening and referrals would require transparent, bidirectional patient-practitioner communication, systematic HRSN screening protocols and accountability, and mitigation of systemic barriers that disproportionately affect minoritized patients (eg, staff shortages, time constraints, and biases). Conclusions and Relevance: In this qualitative study, Black and Latine patients described their perceptions of HRSN screening and referral systems, emphasizing compounding barriers across screening, referral, and resource receipt and underscoring how fears of negative consequences may limit disclosure of HRSNs. Together, these findings highlight how interpersonal and structural racism influence the likelihood of Black and Latine patients' needs being recognized or addressed. An intentional approach is necessary to enhance patient trust and to implement systematic, universal, patient-centered social care systems.

  PublisherOA PDFDOI

• Psychosocial Health and Chronic Health Conditions Among Bereaved Siblings: A Report From the Childhood Cancer Survivor Study (CCSS)

  Pediatric Blood & Cancer · 2025-09-28

  articleOpen access

  OBJECTIVE: To compare psychosocial health and chronic health conditions (CHCs) in bereaved and non-bereaved adult siblings impacted by childhood cancer and to identify predictors of emotional distress and health-related quality of life among bereaved siblings. METHODS: A total of 4558 adult siblings (733 bereaved; 3825 non-bereaved) of 5-year survivors of childhood cancer completed measures of emotional distress (Brief Symptom Inventory [BSI]-18) and health-related quality of life (Medical Outcomes Survey Short Form [SF]-36) and reported their social attainment milestones (i.e., educational attainment, employment, and marital status). CHCs' burden was classified as none/low versus medium/high/very severe. Cancer-associated complications prior to the patient's death, sibling age at bereavement, and social attainment variables were examined as predictors of emotional distress and health-related quality of life among bereaved siblings using multivariable modified Poisson regression. RESULTS: Bereaved siblings in this sample reported excellent psychosocial health long term (e.g., depressive symptoms 6.5%, somatization 4.4%, anxiety 3.5%). Bereaved siblings had an elevated risk of depression (relative risk [RR] 1.53; 1.10-2.13, p = 0.01), reduced social quality of life (RR 1.35; 1.00-1.82, p = 0.05), diminished educational attainment, and greater CHC burden than non-bereaved siblings. No differences were observed for other subscales or social attainment outcomes. Among bereaved siblings, risk factors for depression included male sex (RR 0.42; 0.19-0.93, p = 0.05), never being married (RR 3.02; 1.45-6.28, p = 0.05), and greater CHC burden (RR 2.42; 1.18-4.99, p = 0.05). Risk factors for poor social functioning included unemployment (RR 2.24; 1.12-4.45, p = 0.05) and never being married (RR 2.16; 1.22-3.82, p = 0.05). CONCLUSION: Bereaved siblings report excellent psychosocial health long-term and demonstrate only a marginally elevated risk of experiencing symptoms of depression and poor social quality of life compared to non-bereaved siblings.

  PublisherOA PDFDOI

• Impact of a Sleep-Promoting Schedule on Sleep Quality in the Intensive Care Unit

  Critical Care Nurse · 2025-04-01

  article1st authorCorresponding

  BACKGROUND: Hospitalized patients often experience sleep disruption that fragments their sleep and disturbs their circadian rhythms, putting them at risk for sleep deprivation. The risk increases with greater severity of illness and is especially high in intensive care unit patients. Sleep deprivation can prolong the intensive care unit stay, contribute to emotional and physiological distress, and even increase the patient's risk of death. LOCAL PROBLEM: Critical care nurses in a 28-bed medical intensive care unit reported that patients often complained of sleep disruption or exhibited emotional and physical distress resulting from sleep deprivation. An analysis of the gap between recommended evidence-based best practice and current practices in the unit revealed numerous opportunities to improve patients' sleep. The aim of this evidence-based quality improvement project was to increase interprofessional adherence to an existing sleep-promoting schedule to reduce avoidable interruptions and improve patient sleep quality. METHODS: To promote sleep, staff member interactions with patients between midnight and 4 am were minimized, if appropriate. Documented patient encounters and call bell initiation were evaluated as process measures. Patients' self-perceived sleep quality, an outcome measure, was evaluated using the Richards-Campbell Sleep Questionnaire. RESULTS: Adherence to a sleep-promoting schedule reduced patient sleep interruptions between midnight and 4 am by as much as two-thirds while increasing patients' overall self-perceived sleep quality by 6.7 percentage points. CONCLUSION: An interprofessional effort to minimize patient interruptions at night in an intensive care unit setting led to improved patient sleep quality and sustainable practice changes.

  PublisherDOI

• Shared Priorities for Sibling Psychosocial Support in Pediatric Cancer Care: A Value‐Weighting Study

  Pediatric Blood & Cancer · 2025-02-03 · 2 citations

  articleSenior author

  BACKGROUND: Although psychosocial support for siblings of youth with cancer is a standard of care, what sibling supportive services should entail remains unclear. Given limited resources for sibling care, establishing clinical and research priorities may guide resource allocation toward supports perceived as holding the greatest potential benefit. The current study used a two-round, value-weighting approach to identify priorities for sibling support services. PROCEDURE: Participants were recruited from a group of sibling experts (clinicians, researchers, community program leaders, and adults who had a sibling with childhood cancer) invited to attend an international sibling summit. In Round 1, 27 participants provided feedback on a list of potential priorities for sibling psychosocial support. In Round 2, 30 participants completed a web-based value-weighting questionnaire indicating how they would allocate 100 units of hypothetical funding among various priorities and qualitatively described the rationale for their decisions. RESULTS: Funding allocations generally averaged out across participants, highlighting the need for investments across all domains of sibling support. Participants allocated the greatest proportion of hypothetical funding to community-based sibling supports, which they perceived as more accessible to siblings than hospital-based supports. Participants allocated a particularly high level of funding to sibling supports in local schools. Within sibling subpopulations, bereaved siblings, siblings during active cancer treatment, and siblings with more adverse social determinants of health were allocated the largest proportion of funds. CONCLUSIONS: Sibling-focused researchers, clinicians, program leaders, and adult siblings endorse broad investments in sibling support. Investments in community-based supports particularly may improve access to sibling support services.

  PublisherDOI

• The mindful way through self-stigma: An open pilot study of a single-session acceptance-based behavioral therapy workshop for mental health self-stigma.

  Stigma and Health · 2025-02-17

  article
  PublisherDOI

• Sibling Involvement in Childhood Cancer Treatment: Exploring Family Decision-Making Processes

  Clinical Practice in Pediatric Psychology · 2025-06-19 · 1 citations

  article

  Objective: Siblings of youth with cancer face increased psychosocial risk. The psychosocial standards of care in pediatric oncology recommend siblings be involved in cancer treatment (i.e., visit patients during hospitalizations, receive developmentally appropriate information about cancer) to promote adjustment to cancer. However, siblings are frequently absent from treatment settings, and it is unclear how families determine siblings’ level of involvement in cancer treatment. This qualitative study aimed to characterize family decision-making regarding siblings’ involvement in cancer treatment. Methods: We conducted semi-structured qualitative interviews with 16 families ( n = 22 siblings; n = 16 parents) of youth with cancer, querying siblings’ involvement in cancer treatment, families’ decision-making processes, and siblings’ levels of satisfaction with involvement. Data were transcribed, cleaned, systematically coded, and analyzed with Applied Thematic Analysis. Results: Parents often decided on sibling involvement based on competing considerations: the best interests of the child with cancer, sibling routines, logistics, and systemic barriers (e.g., scarcity of hospital-based supports). Siblings want to be included in decision-making processes regarding their involvement, which they describe helps them feel included and important. Conclusions: Providers can take active roles in facilitating communication within the family about siblings’ needs and treatment involvement preferences. Potential avenues for improvement include hospital-based sibling supports and healthcare providers’ relationships with families.

  PublisherDOI

Frequent coauthors

• J. Rick Turner

  IQVIA (United States)

  1120 shared

• Yori Gidron

  University of Haifa

  456 shared

• Alan M. Delamater

  316 shared

• William Whang

  Icahn School of Medicine at Mount Sinai

  302 shared

• Pamela S. King

  Wayne State University

  302 shared

• James Turner

  University of Birmingham

  240 shared

• Melissa A. Alderfer

  186 shared

• Jessica E. Haberer

  Harvard University

  160 shared

Education

• Ph.D., Clinical and Biological-Health Psychology

  University of Pittsburgh

  2012