Adolescents of parents with chronic pain whose parents were ‘shut off’ report more hardship and feelings of distance than those with a more open relationship
- Correspondence to: Dr Lynn Rew, School of Nursing, The University of Texas, Austin, TX, USA;
Implications for practice and research
Social connectedness, for example having friends and other caring adults outside the family, is essential for healthy adolescent development.
Family members, including adolescents, must be included in the assessment and planning of interventions for adults with chronic pain.
Future research with larger samples and data from additional family members could further validate the concepts and processes identified in this study.
It is estimated that nearly one-third of people over 18 years of age have experienced chronic pain lasting at least 6 months.1 When chronic pain affects adults who are parents, children, particularly adolescents, may experience adjustment problems including anxiety, depression and aggression towards others.2 Adolescence is a time of vast change, often placing individuals at risk for adverse health and behavioural outcomes.3 Umberger and colleagues sought to develop a theory of how adolescents respond to living with a parent with chronic pain.
A grounded theory approach was adopted. Interview data from 30 young adults 18–21 years of age, purposively recruited, was obtained and focused on how they processed their parent's chronic pain during adolescence. Each participant was paid $35 following the interview. Data were analysed using a classic grounded theory approach of constant comparative analysis: interview audio recordings were transcribed, verified and then analysed using three levels of coding. Appropriate strategies to enhance rigour, credibility and relevance of the theory, as it emerged, were reported.
The social process reported by participants living with a parent with chronic pain depended on the extent of the parent's pain and on how much the adolescent could communicate with the parent about how their parent's situation affected them. Using the metaphor of a shroud, the researchers reported how participants described their parent as either being unavailable to meet the adolescent's needs because of the pain (heavily shrouded) or available and responsive to the adolescent's needs (less shrouded). Similarly, participants either fully concealed their feelings and needs from their parent (shrouded) or found ways to express their feelings openly (less shrouded). As adolescents, participants coped by hiding their feelings, distancing themselves from their parent, grieving about the loss of a usual parent–child relationship, feeling angry, frustrated or afraid, and forming relationships with significant others. Some adolescents were more empathic but still worried and felt sad about their parent with chronic pain.
Umberger and colleagues sought to develop a theory of how adolescents experienced the process of living with a parent who had chronic non-cancer pain (CNCP). Their findings expand current understanding of how children and adolescents cope and adapt during the critical developmental stage of adolescence. The study also sheds light on the characteristics that relate to coping mechanisms (shrouding) of the parent with chronic pain and coping (shrouding) strategies of the developing adolescent. Although some adolescents experienced a parent–child role reversal, this was not the main social process described by the majority of participants. Whereas other studies focused only on mothers with chronic pain,2 ,4 a strength of this study was the inclusion of the adolescents’ fathers with chronic pain.
Limitations of the study included using a retrospective design, depending on recall of critical experiences, and including only one child from the family. Potential participants were rigorously screened and only those who were close enough to travel to the investigator were interviewed. Other limitations were lack of contextual details about the family and the length of the parents’ chronic pain.
Nurses who care for parents who experience CNCP can use these findings to understand more fully the importance of including family members in the assessment, planning and treatment of a parent with chronic pain. Nurses can listen to children and adolescents about their needs and assist them in developing adaptive coping strategies. School nurses and counsellors should be informed of the parent's situation so they might help the adolescent learn to identify significant others who might fill gaps in the parent–child relationship. Extended family members such as grandparents, aunts and uncles could also be included in management plans for the patient with chronic pain. Nurses may consider referring the family for family counselling. What might seem solely an adolescent problem could reflect a larger problem of communication and stress management within the family system.